Healing Anaya

In the Space that Belongs to you

2012-02-18T10:24:00.000-08:00

Angel and Anaya

In the space that belongs to you I have placed your soft blankets.
I put my love there
and my tears.

In the space that belongs to you I have hung rainbows.
I place my kisses there
and sweet "I love you's"

In the space that belongs to you your puppy plays.
Her softness there
and wet kisses.

In the space that belongs to you I have seen rainbow sunsets.
I see your beauty there
and my own.

In the space that belongs to you I am safe and comforted.
I feel your love there
and I am whole.

In the space that belongs to you there are no walls.
Children play and the sun shines
seeing the joy that is your soul.

The space that belongs to you isn't a place.
It's a love and a memory- the smiles and tears on my face.

I see you everywhere Anaya, and I know that it's true.
You've always loved me, as much as I loved you.

Love and Happiness

2012-02-08T23:36:00.000-08:00

Love. How do you explain love to someone who's never experienced it? What is love?

It is an opening. A deep understanding of the root of life, on a subconcious level. It is beauty. Beauty like that which you have never seen with your eyes nor heard with your ears. It is a connection, a knowingness. It is seeing yourself reflected in another, and knowing your own inner beauty. It is a strength. A strength that wells up in the core of your being. A mighty power of will that cannot be defeated. It is vulnerability, but not weakness. It is courage and freedom, and innocence. It is Fierceness and joy. The leap of faith that takes the Eagle off the mountaintop into the sky soaring amongst the clouds into the twilight of the sun.

It is acceptance. It is joy. It is sadness. It is what makes life worth living. It is something that can never be taken from you. It is what I feel inside.

Happiness is not a place you can be travel to. It is not something that can be bought. Or sold. It is a spiritual experience attained through living each moment with love, grace and gratitude.

Anaya, I love you. Thank you for teaching me to live my life with Love. And for teaching patience. And compassion. Because of your teaching I often walk the path of happiness, even when I miss you.

Posting

2012-01-25T22:42:00.000-08:00

If you would like to read about my work in Italy with little Krabbe Baby Ginevra and her family please visit my new blog at

www.camaraloves.blogspot.com

Camara: Love in Action - Italy 1 - YouTube

2012-01-24T19:21:00.000-08:00

Today I got into the office and started by checking my Facebook.

My first message was from a couple in Italy. Their daughter, Ginevra, has Krabbe Leukodystrophy. She is such a beautiful baby girl. They said that she was having trouble breathing and they asked me if I had any advice for them. They told me that their doctors have never seen a baby with Krabbe. I had already told them what I could from afar...so I asked if they wanted me to come there and help them. They said yes. I booked a flight immediately and decided I would worry about paying for it later. I'm hoping that my friends and other caring people will pitch in. The round trip is only $1100. We've already raised $350.

So now I'm sitting at the gate waiting for my plane. I've never left the continent before and I'm really excited.

I'm even more excited to hold baby Ginevra in my arms and give her the sweetest kiss. Krabbe Babies are like nothing else. Super soft angelic beauties.

Camara: Love in Action - Italy 1 - YouTube

Camara Love in Action 1 - YouTube

2012-01-23T16:38:00.000-08:00

Today I made my first video blog.

Camara Love in Action 1 - YouTube

Stillness

2012-01-17T21:20:00.000-08:00

It's been a while since I've written I know. I apologize. It's just that I don't know how to convey what I am feeling without making everyone else sad. Here goes.

There are moments of stillness in the night when I lay awake and cannot sleep. My heightened awareness of Anaya always had me sleeping lightly. I used to fall asleep to the sound of her soft little breaths. Sometimes gurgley breaths. But noise all the same. Now the room is so still without those sounds that I have to get up, go to the bathroom, and go back to bed - just so that I don't lay there observing the silence and getting depressed. I take my rainbow frog that is approximately the size of a toddler, and I hold it to my chest with Anaya's prayer / love blanket. I imagine I am holding her, and the feeling of the stuffy is comforting. I fall asleep again.

I never knew how incredibly tired I was until fairly recently when it seems like my body decided it was time to cash-in on the sleep I owed it. I have literally slept for 18 hours straight three days this week. We're starting to sell off the things we had for Anaya that we have no use for right now and that aren't sentimental, but valuable and can help us pay the bills. For instance the breast milk deep freeze that we bought brand new one year ago. Her new car seat - (Britax super supportive baby-big kid), Etc.

It feels like a little bit of my heart peels away every time something of Anaya's goes out the door. I know it's just stuff. It's the memories associated with the stuff that I don't want to lose.

On the home front: I have never ever cared less about the appearance of my home. I know it used to be important to me but right now I have a huge stack of receipts/bills/papers/stuff on my desk, on my dresser etc. I cleaned the shower today and it was epic. I didn't do the rest of the bathroom. Just the shower. The rest wasn't dirty enough. I don't know if I'm lazy or crazy or what. I just know that housework does not inspire me at all. I haven't even finished unpacking. I'm afraid to go through those boxes. I never have guests. In Nelson people would just drop by. Here most of my friends work and then spend time with their families at night. I miss having company. Maybe then I'd be inspired to finish unpacking and keep my home it a straighter state of affairs. Don't get me wrong. My home isn't disgusting or anything. It's just that I'm a Virgo and I'm usually quite anal retentive about keeping things neat and tidy. It's really out of character for me to have not cleaned the whole bathroom at once...

The thing I find most inspirational right now is my work. I really love working for FundRazr. The people are great. I'm not just saying that. My boss is a really decent human being, who wants to change the world for the better. I find joy in helping others. In the past 2 weeks I feel as though I have made a significant impact on people's lives. I feel great knowing that I helped these people in their time of need. I will continue to do so. (But keep in mind I'm human and I rest on weekends and at night most of the time)

The last few days I've been really sick and tired. I decided that maybe a cleanse would help break me from my lethargy and exhaustion. I'm now on day 3 of the Master Cleanse. Yesterday I had a horrible headache. I'm feeling much better now and in the morning when I head into the office I hope I will still feel alright. I know that if I continue on with the cleanse for at least a few more days it will have an amazing impact on my health, and my spirits.

Brent has been working on his illustrations. Solara is having trouble with math, but is loving having her friends to play with at home. And Angel is an attention fiend who always wants to be cuddled up to something. I'm not sure why her breath is so bad but it's as nasty as mine is (cleanse breath). I think it might have something to do with her food containing fish. She has fishy breath. Ugh. My friend Penny told my that Golden Retrievers just smell bad - but that can't be right! She is unwittingly drawn to sparkles and when the crystal that hangs in the window spins rainbows around the room in the sun, she FREAKS out and starts running back and forth barking. When I type on my computer she sits and watches the reflection on the wall, occasionally attacking it.

I'm heading to bed now. I know this update wasn't spectacular - it's just the surface.

All is not Lost

2012-01-10T10:41:00.000-08:00

As I was coming out of Waterfront Station there was a single car in the parking lot. Across the front it said "All is Not Lost". It was for a data recovery service. It was also a message from Anaya.

Mostly I fear to tell you about my moments of despair. I think because those moments scare me. I don't want to be trapped in despair and depression and I work hard to keep myself out of it. Sadness is different. Sadness is alright and when I feel sad, I feel sad. I let it out. I cry. The other day I screamed and bawled into my pillow with sadness for more than an hour. It needed to come out. Then there are moments of despair that can creep in when I am really tired and stressed. Moments when I wonder what the point of being alive is. Moments where I can't feel love and don't feel loved. I think everyone has a wide range of emotions, myself more so. I am rather extreme sometimes. Either I'm really good or really sad. I try to find a balance and lately have been having more "Ok" times. I find the more I help others the better I feel.

Today I was on the train and I was sitting by the door. A young man (so cute-looked like Clark from Smallville) got on the train with crutches. I offered him my seat and sat down beside him. He smiled at me. I asked him what happened. He got out his dictionary and explained to me in a very french dialect, using broken English, that he had sprained his ankle. I encouraged his efforts to speak English and then switched to Spanish - where we had a bit more common ground.

Just then the police boarded the train and asked to see every one's tickets. I turned to Benjamin (blue eyed french boy) and he looked puzzled. I pulled out my ticket and showed him and said he needed to get his out. He searched through his wallet and found it. The cop came over, looked at Benjamin's ticket and said "You didn't scratch your Zone. I'm going to give you a $170 ticket." Well I could tell that Benjamin did not understand what was being said, and I was certain that he didn't know about scratching zones. I spoke to the officer.
"I don't think he understands you. He doesn't speak English well. Do you speak French?"
"No, but my partner does." He waved his female partner over. She spoke gently and kindly to Benjamin and scratched off his zone and explained it to him. They got off the train.

Benjamin said "What was the man meaning?" I told him he was going to get a $170 ticket. His eyes opened wide and he said "Really?". I smiled and nodded. He thanked me. We chatted a bit about how he is here to learn English. Then it was his stop and he hopped away on his crutches. He dissapeered into the crowd and I smiled as the train moved on.

Then I got off the train and there in the parking lot was my sign.

"All is not lost"

Here's to another day of helping people, another day of being the rainbow in the lives of people willing to look up and see me. The way I look and see her. Everywhere.

The Rock in the Storm

2012-01-04T11:02:00.000-08:00

I have discovered something about myself. It's an incredible strength. I find it is now a natural part of me. It is an ability to deal with trauma. My own, and others. An ability to stay calm, not panic, and take action. When my grandfather was dying in September - I helped the paramedics by providing suction and maintaining the airway. When Anaya was having respiratory arrest - I was giving critical information to the trauma team, suctioning her throat, venting her G tube, helping the nurse find the correct spot to take her blood pressure. I held her head in position so that they could insert the breathing tube down her throat into her lungs. I gave oral summaries to the trauma team, the pediatric ambulance crew and our ICU nurses. I held the flashlight for the paramedic in the plane as we flew through the rain in the night. I did it all again when we arrived at the BC Childrens.

Then I was the one who took the mask off. I maintained her comfort, ordered the morphine and removed all the tubes and wires. Then I gave her every ounce of love and energy that I could. It flowed out of me like a river and supported her soul in it's crossing. It was not a time of grieving it was a time of support. She needed my strength, and I had it. It was inside me. It was a rock in the storm. Unmovable, stable. Yet my hard had not hardened, my soul had not withered. I was not the only one there, yet I was so focused that they seemed to fade from my reality. The love swirled around the room like a rainbow tempest and then she was gone.

The body I held in my arms was not Anaya. It was only the body that she had inhabited. I loved her body too. I kissed her sweet cheeks, her fingers, her toes. I stroked her hair. Then I set her down gently on the bed and left the room and never went back in.

What a precious blessing to have learned this strength in my lifetime. What an incredible gift I can share with others. I noticed I can still do it. I can still manage trauma like a rock in a storm - with a wide open heart and a clear soul.

The day before yesterday I got a message asking for help.

"House Fire, children and husband dead - mother alone and in shock -Fundraising starting to help her."

I began researching and I found newspaper articles with dead links that informed people to head to a non-existant Facebook Page. I immediately took action, connecting with the administrators who had begun assembling a group of support. I started a Facebook Page that would match the media attention, migrated the existing users and started an online FundRazr to make it easier for people accross the country to donate while there was still immediate interest.

I combined my skills with dealing with trauma and fundraising with social media - all the while my heart burned with the fire of her loss.

I can see it all so clearly in my mind as if I was her. Running down the street towards the flames and smoke screaming for my children. Being held back from throwing myself into the burning wreckage to try to save them. The heat from the blaze is scorching, the air thick with smoke. Struggling to breathe I continue screaming and weeping with terror and grief.

Then the fire is out. The smoke clears. And they are all gone and I am alone, surrounded by people, but completely alone. I have nothing. No clothes, no toothbrush, even my favorite pillow is gone. My partner, my heart, my babies. My babies. Blinking, I feel the world caving in on me and I breathe staggered breaths. My chest aches as though there is a black hole in my heart and it feels like it will kill me.

That is how I imagine it. Deep and traumatic and raw. I can feel it. I know that one of the human body's survival mechanisms is shock. I know that right now she will be in shock. She may be unable to focus, feel anything, or even grieve. The whole world is alien and everything is messed up and confusing. I know that it will be that way for a while.

That is why she needed my help. Why she needs OUR help. We, who are in a state of strength, have the ability to reach out and make a difference in someone's time of need.

I am Camara. I am strong and I can help make a difference in people's lives - with a wide open heart and a soul filled with rainbows. You can make a difference too. Share this link and give this woman a moment of your own strength. If you know someone who needs my help - send them to me. I have the strength.

Yup. A dog and a slide.

2011-12-27T19:48:00.000-08:00

Here she comes, bounding across the room at a run. I'm standing near the couch. Her tail is wagging so hard that she's having trouble running with her back feet and she trips over herself, doing a face plant into the floor. Unphased she lurches to her feet and wedges her golden body between my knees. She likes having her legs and back scratched in this position, but begins circling around so that she can go through the "back scratcher" again and again. I'm leaning over as her tail disappears and suddenly I've got a face full of puppy tongue.

Her breath is usually okay. Puppy breath. Even though she's almost full grown now. She's the same size as Buddha. She used to be smaller than Anaya. Now she's almost too heavy for me to lift. She's still as sweet as ever. She loves affection. She is an absolute affection hound. I remember how she used to snuggle up to Anaya. I remember how sweet it was to see them together. Best buds. Snuggle buddies. Lately at night she's been sleeping at the end of Solara's bed, cuddled up at her feet. In the morning when I wake up to visit the bathroom I have to carefully leap over the spot outside my door that creaks - otherwise it will wake Angel up and she get so excited to see everyone that she wakes everyone in the house up.

I know I was really down over Christmas, but I'm starting to feel better already. Yesterday after writing my blog post I was still really lethargic and down. I couldn't seem to get out of my slump. I basically laid around, sad, mopey and down for hours. I felt like a lump on a log. I needed to get out of the house and get some exercise and have some fun. I needed to find something to do.

I got out my computer and began searching for family activities in our community. I found the Eileen Daily pool and the picture looked pretty awesome. They have a waterslide, a lane pool, a leisure pool, hot tube, sauna and steam room. They've also got an exercises room. We decided that we would get our butts in gear and get out of the house. We searched for our swimsuits in boxes yet unpacked, grabbed some towels and headed out the door.

The pool took only ten minutes to get to, we must have been lucky with the traffic. When we arrived Solara saw the slide coming out through the building and she said "Whoa!! Look at that HUGE slide!" That was when I started to feel a bit of excitement too. We paid and I was surprised to note that it was cheaper to go to this pool than the one in Nelson. It was about $3 each. Solara led us to the famiy changing room (which we've always used because it takes an army to get Anaya in and out of her wet suit), and that was when it hit me. Anaya wasn't with us. She wouldn't get to float in the water, or zoom around on a floaty with daddy. I pushed the thought to the back of my mind and focused on the feeling of the cold, wet, slightly yucky changeroom floor. I detest changeroom floors at pools. It seems impossible to find a clean dry spot to dry your feet off before putting socks on....ugh...

So I pull on my swimsuit, everyone shoves their stuff in our locker and we head out to the pool itself. It's a neat place. Solara tugged at my arm, indicating that she wanted to go into the big pool. Upon entering the water I noticed that it was nice and warm. We swam and chased each other, floating around on giant turtles and butterflies. I missed Anaya and thought of what it would be like to have her with us, floating around. I rolled over onto my back and looked up at the ceiling. A plethora of rainbows surrounded us. There were all sorts of kites hanging from the rafters and not plain kites, either. There were dragons, mermaids, flying fish, airplanes, windsurfers and more. Anaya was there with us after all. My gaze turned towards a shiny glint in the corner of my eye, and stuck in the air exhaust vent I saw a balloon. It was the same rainbow tye-dye balloon that I got Anaya for her birthday last August. I smiled.

All in all things were going much better. We did laps going up the stairs to the waterslide, sliding down, and going back up. Now that is a fun workout. I could do that all day. We played "diving whales" in the dive tank. I made quite the splash.

When we got home we were happy and tired. We all slept soundly and awoke this morning in a good mood. I'm so glad that I'm feeling better. Being depressed us such an awful feeling. I'm glad I made the decision to get out and try to do something fun.

Moss and Moonbeams

2011-12-26T10:09:00.000-08:00

Christmas eve came. It was raining. I sat with my coffee on the couch, having awakened feeling tired and meloncholy. I gazed out the living room window. The rain was falling consistantly from the sky. It's a coastal winter rain. The kind that has no beginning and no end, it just seems to arrive when you don't notice, and it can go on for days. There is no thunder with it's arrival, no torrential outpouring of noise, it simply is. The mist seems to fall in upon itself, creating water droplets which fall from the sky.

The moss on the tree outside the window was loving it. In a world of gray rainy gloom, the brightest, cheeriest organism outside was definately the moss. It grows like a thick flourescent green carpet coating the old tree. The tree dropped it's leaves in the fall. Without leaves it seems to be a sleeping tree-being surrounded by a living blanket. The moss grows up the trunk, and spreads out onto the arms and limbs of the tree. It is so wet and vibrant and green.

The raindrops are falling from the sky rather quickly, but not large drops, almost a mist too heavy to stay alight on the wind. The tree is a sponge of wetness, and from it's mossy arms larger drops fall slowly. The coalescing of each droplet seems a moment outside of time, compared to the fast falling of the rain. The eye can not see both at once. You must either be watching the rain, or seeing the droplets falling from the tree.

It suits my grief. I am the tree. The rain falls quickly around me, my tears fall slowly. I am outside of normal time. The sadness engulfs me, and my aching heart beats slowly in time with the tear drops falling from the moss.

I sat there for quite a while watching the tree out the window, feeling it's presence and allowing myself to relate my emotions to what I was seeing. After a while I felt like returning to bed. I remembered the day in 1995 that my mother died on. I remember how my life changed that Christmas eve. Everything changed. My whole world shifted. This year my world has shifted again. My little love is not here to hold and cuddle for Christmas. I know that she's alright, it is simply my yearning for her physical presence that causes me grief. Simple to understand. Not simple to get out of.

Christmas day came. Solara opened her presents. Brent and I didn't get each other much. Money is tight. Anaya's final medical bills sit in a pile on my desk. Somewhere around $50K... we are submitting them to BC medical services plan to see if they will cover some of it. I have to fill out pages and pages of papers and I've been dreading it because the amount of the debt frightens me. I have not yet earned a cent from my job - and although I am working hard at it and I have faith that it will pay off in the end, I'm not sure exactly when I'll be able to pay the bills.

I'm not finding joy in anything. I don't want to play, I don't want to cook. I have no happy thoughts. I am engulfed in a cloud. I've been trying to find my happy thoughts. I've been trying to focus on the positive. It just seems like a horrendous chore right now. I know that eventually I will feel better. It might be today, might be tommorow. It might be a few days from now, but eventually this melancholy will go away.

I had a talk with Solara last night. I explained to her what I'm feeling and how I need to be allowed to be sad when I feel sad. She understood and we connected on a soul level. It is good to be with her. I love her. She's such a creative little being. I did my best to make Christmas special for her - even though I wasn't feeling it.

Sometimes the rain in my heart just arrives and drips from my eyes. It is a coastal winter rain. There is no thunder with it's arrival, no torrential outpouring of noise, it simply is.

Anaya's love is like a moon beam on a cloudy rainy night. I know it's there but I can't see it.

Krabbe Disease / Krabbe Leukodystrophy Treatment

2011-12-23T09:36:00.000-08:00

Understanding Krabbe Disease and Gene Therapy Stem Cell Treatment
Written by Sarah Turner, M.D.

Krabbe’s Disease is a disease that affects the storage in cells – our cells are like little factories that make things….proteins, hormones, transmitters, etc. What they make is all decided by their DNA, and the messages that are encoded. After the cells make things, they package them off and ship them out, or occasionally store them for later use. There is also a part of the cell that is responsible for ‘cleaning up.’ One of the things that cells make are enzymes, which are little proteins that can ‘neutralize’ cell waste and dispose of it. The problem with Krabbe’s is that the enzymes needed (galactocerebrocidase) to destroy one type of waste, is encoded on a part of the DNA that’s mis-written, so they never get made. This waste (from the myelin), builds up in the storage part of the factory, until they just overflow all over the place, and then poison the cell. If that cell (the factory) is cell component of myelin, then the myelin cells die. Myelin is like the plastic sheath around an electrical cord…it insulates the components and keep it safe, and it allows fast and efficient current. Myelin insulates our nerves – they control everything in the body, from your 5 senses, your ability to move, touch and feel, your ability to swallow, digest, and to make your heart beat and your lungs breath. Babies born with Krabbe’s develop normally, because their storage isn’t full yet, so their cells are all functioning well. Once the waste builds up to a point, cells will start dying, and the accumulated waste just builds up, causing more toxins. This inevitably makes the network of nerves be so unprotected, that the currents don’t flow, and the functions are lost. Children who had already started to develop will begin to lose these functions, and it’s often not caught until the disease has already caused enough damage to affect major functions.

To date, Krabbe’s is always fatal, and so far the only treatment has been to use stem cells (precursor cells – see below), but this only slows the pace of the disease, it doesn’t cure it. Added to this, stem cells can’t be just found easily; everyone’s cells are different, and your body has a surveillance team (the immune system) who keeps watch over the body for when there’s trouble. When you get a cut, sprain, bruise, broken bone, stomach flu, cold, parasite, tumor….anything that is not a perfectly functioning system, and your immune system is involved. Since it’s looking for things that don’t belong, it will recognize cells that aren’t made on site (like ANY type of donor cells, for any type of donation), and it can often fight against these cells, and you can have rejection (even of blood). People getting donations of any sort are kept at an ‘immunosuppressed state’ which means before getting a transplant/transfer of donated tissue/cells, someone needs to take meds or get radiation to weaken their immune system. This weakening of the surveillance system lets these donor cells slip in and get working without getting recognized. The flip side to all this is that sometimes the donated cells will decide to attack the body they’ve been put in, and this can cause a reverse rejection. Everyone has a set of proteins that it uses to put a ‘self-identity tag’ on their cells. These proteins are combinations from a pool of proteins, so when looking for donors, you want to have cells that have as many of the same ‘identity proteins’ as possible. This is what we’re looking for when we’re looking for a ‘match.’ Needless to say, transplants of tissue and cells is not something to be taken lightly – it can be lifesaving, but it can also make the situation worse.

When people talk about Stem Cells, they are talking about precursor cells – cells all start out like a blank slate that can be assigned to become any of a number of types of cells. We use stem cells when we need to make more of a type of cell, or more of a cell that makes something that we need. We can program these cells into being of a specific type, making a specific protein we need….it’s pretty cool really. There’s lots of controversy in using stem cells, but they don’t just come from where everyone assumes they’re coming from; they are in umbilical cord blood too. We can save this blood to be used for stem cell research and treatment.

So this new approach is called ‘Gene Therapy.’ It all starts with viruses – when looking at infections, the causative agents are usually bacteria, viruses, fungus or parasite. Bacteria are little cells that aren’t always bad; we have a ton of bacteria that just inhabit our body and actually help with things (ie. digestion). Some of them are total little hoodlems, and run around the body just messing with your stuff. They get into cells and mess up the messaging, some cells eat them and some blow them up. It’s like spy games all over the body, with your immune system running around trying get these guys out, and there’s gunplay, and innocent victims….not always all that pleasant. Viruses are totally different – they are like droids or robots. They don’t have a mind of their own so much as they are on a mission and they are programmed to spread their message, so to speak. Viral vectors (the one for this study is from the lentivirus family/species) are what are used in Gene Therapy; they are like little robot bug looking things (actually kinda like the lunar lander), who come and land on a cell, stick their butts through the cell’s outer layer, and they just crap in their message (DNA, RNA), and some strong-arm workers (enzymes and proteins), and they hijack your cells. They come in, go to the manager (the nucleus), demand to see the blueprint code (DNA), and they put some of their own code into it. This is so the cell can use the cell factory to make things that the virus needs (ie, other viruses), and then eventually the cell will die when the viruses all break out (or hide out for a later break out.) This is why lots of viruses are associated with cancers (not a lot…don’t freak out or anything) – viruses mess with your DNA, and often it messes with the on and off switch, and this can cause cancer.

So enter gene therapy – if we can program a virus with the DNA of things that we WANT the cell to make, we can put that virus in the person, and the virus will spread the DNA around the body. I’m not familiar with these studies, but I know that they use this with Cystic Fibrosis and it’s been successful, but it’s not permanent – you need treatments every few months or years or something. Anyways, Gene Therapy doesn’t require immunosuppression, it’s not going to cause an attack on the body, and you don’t need to worry about finding any sort of a match. Essentially it’s way safer than just bone marrow transplants, and it has more promise for results. The hope is to encode a lentiviral vector with the code for galactocerebrocidase (the missing/defunct code), have it incorporated into the cell’s DNA, and then BAM – cells are making galactocerebrocidase. It also sounds like the idea is to use stem cells that have been injected with the virus, so that you’re making sure you have lots of healthy cells making this enzyme.

So far, this has been tested in similar diseases that have problems in the same area as Krabbe’s (these are called leukodystropy – it means badly formed white/myelin, and they are all missing enzymes that causes problem with the myelin in some ways). This method is being used on people who have these diseases, and are showing to be successful so far. The reason it hasn’t worked in Krabbe’s yet, is because they had these stem cells implanted with the gene, so they started making the enzyme, and replicating, and they found that the original stem cell that was injected, got sick and died from the enzyme being made, but this didn’t happen in the replications of those cells (the daughter cells). So with this new research, they figured out a way for the code to say that the original stem cells were only to replicate; they found these little proteins (micro-RNAs) that could turn off the “factory” function of the parent cell only, and not of the daughter cells. These little proteins only last so long in the daughter cells, and so they eventually become inactive, and the cells will regain their factory function, and the ability to make the enzyme that the body needs. They have done some preliminary testing on animals that have shown very promising, really improving the quality of life and survival time in Krabbe’s. They have to do some formal animal studies before the treatment can be allowed to be tested on humans, and they estimate that it should be about 2 more years before they will have gotten through all the research they need for the treatment, and can start with human trials. Gene therapy with stem cells has been used in many other genetic diseases, and has proven to be more safe and effective than current methods.

A cure on the horizon...

2011-12-22T15:26:00.000-08:00

I translated this from italian so the english is not perfect.

NEW STRATEGY OF GENE THERAPY FOR KRABBE'S DISEASE

Devised a new strategy of gene therapy to Krabbe disease, a severe genetic disorder that affects the nervous system: thanks to gene therapy with hematopoietic stem cells by an international team of researchers led by Luigi Naldini at the San Raffaele-Telethon Institute for Gene Therapy (HSR-TIGET) of Milan has succeeded for the first time to treat the disease in the animal model. The important result is shown in the pages of Science Translational Medicine *, the new magazine published by the prestigious international scientific journal dedicated to translational research, ie, strongly marked by the transfer 'from the laboratory bench to bedside'.

As explained by Alessandra Biffi, co-director of the study with Luigi Naldini, "Krabbe disease, also called cell leukodystrophy globoidi, is a lysosomal storage disease that strikes in childhood and has a course of rapidly progressive and always fatal. The disease is hereditary and is due to defects in the gene for galattocerebrosidasi (Galco), enzymes responsible for the disposal of some components of myelin, the insulating covering of nerves essential for the conduction of impulses in the central and peripheral nervous system. If the enzyme is defective, minus the natural turnover of these substances, which accumulate in the lysosomes as well (usually appointed facilities for waste disposal cell) and become toxic to myelin. The result is a progressive arrest of psychomotor development of affected children, who also lost motor skills and cognitive skills already acquired. "

Unfortunately to date there is no therapy capable of preventing or halting the progression of the disease, nor seek to restore lost functions. In some cases, can slow the progression of the disease by performing a transplant of hematopoietic stem cells (stem cells of all the elements of the blood) from a healthy donor before the onset of symptoms (ie within the first 4 months of life). Not always, however, is a compatible donor, also this type of transplant carries the risk of rejection by the body to the donor stem cells. Biffi continues: "Our experience in other similar diseases has shown that it can make treatment more effective and less risky genetically corrected hematopoietic stem cells of the patient. To do that you take advantage of specific viral vectors (lentiviral called) that will produce in the patient's cells than normal production of therapeutic gene (Galco in this case), in the absence of risks to the incompatibility between donor and transplant recipient. "

This approach, based on the possibility of using mature blood cells - derived hematopoietic stem cell transplantation - as a vehicle to transport the enzyme functioning in the nervous system affection, has already been successfully applied by researchers to model HSR pre-TIGET Preclinical other lysosomal storage diseases and is currently the subject of an ongoing clinical trial in patients with metachromatic leukodystrophy. So far, however, was not possible to apply it to Krabbe disease because, as explained by Naldini, "we came across an unexpected toxicity of the enzyme for Galco blood stem cells, something that did not occur in their differentiated progeny. We then devised a new strategy to regulate the expression of the therapeutic gene, which must be inserted in the stem cells to ensure its long-term maintenance, and transmit to all their offspring, but there has to express its product. For this we served of microRNAs, small regulatory elements of the expression of other genes. Each micro-RNA can "turn off" the expression of a battery of other genes that recognizes through a sort of 'bar code' imprinted on their message. "

Thanks to a new method developed by them to view the activity of miRNAs in single living cells, researchers have tried TIGET HSR-what were selectively expressed in the rare stem cells from bone marrow and not in their offspring during of differentiation. They found for the first time of microRNAs specific to hematopoietic stem cells and put the bar code recognized by one of these miRNAs in a lentiviral vector for gene therapy of Krabbe disease, which in this way is sensitive to silencing by microRNA. "Even if the vector is inserted into stem cells, the therapeutic gene can be expressed only in their mature progeny, after the microRNA has died" explains Naldini (see also figure below). "The transplantation of genetically corrected cells in animal model of Krabbe's disease, which presents a very human-like," has significantly improved the conditions of life and survival of treated animals. In particular, this therapy approach gene was more beneficial than the traditional transplanting healthy donor. In addition, our strategy is promising not only for the treatment of Krabbe disease, we intend to move to a clinical trial on patients as soon as we finished the other preclinical studies necessary - expected in 2 years - but also because it allows for more effective and safe gene therapy based on hematopoietic stem cells in many other genetic diseases. "

Sign their work as first authors Bernhard Gentner, a German researcher and medical Visigalli Ilaria, both in training at the Hsr-TIGET and University San Raffaele, University of Toronto and other collaborators. The study was conducted with funding provided by Telethon, the European Community, Cariplo Foundation (Project Nobel), National Tay Sachs and Allied Diseases Association and the European Leukodystrophy Association (ELA).

* B. Gentner, I. Visigalli, H. Hiramatsu, E. Lechman, S. Hungarians, A. Giustacchini, G. Schira, M. Amendola, A. Quattrini, S. Martin, A. Orlacchio, JE Dick, A. Biffi, L. Naldini, Hematopoietic Stem Cell-Identification of Specific Gene Therapy of miRNAs Enables Globoid Leukodystrophy. Sci Transl. Med 2, 58ra84 (2010).

Wow. Is it Christmas yet?

2011-12-21T16:19:00.000-08:00

I apologize for not writing more often lately. Guests arrived on Saturday, I started working in the FundRazr office on Monday, I've had to work on Christmas gifts and cards - not to mention house cleaning etc!

Underneath all of it I have not forgotten what my priorities are.

Help Anaya Save Babies. Love (and spend time with) my family, pay the bills. (In no specific order).

Working with FundRazr is very exciting to me. I get to be creative, share my ideas, use my brain and help people! I hope that soon it will begin to pay off and I will make a decent living. I have faith that this is what I'm meant to do - the money will come. Part of why I find it so exciting is because I will be able to network with a large audience to make newborn screening and Krabbe Leukodystrophy more public.

Today at work I made a tutorial about how to use the FundRazr app. Check it out if you are interested. Feel free to leave feedback. I wish I was a better graphic artist. I think the pictures in the tutorial could have been better.

How to Fundraise Online: Starting with the FundRazr App!: Today I am going to take you on a walk-through of how to start a successful FundRazr Campaign.

I miss Anaya all the time. Especially at bed time. I must be the only 30 year old woman I know who sleeps with a stuffy. I also sleep with Anaya's blanket. She is my first thought in the morning, and my last thought in the night. I love her with all my heart.

I don't have much Christmas Spirit this year. I'm doing my best to be festive...but I just don't feel it. In the spirit of Christmas I am going to remember to treat others the way I want to be treated, and be kind and generous.

Love you all,

Camara

Stone of Courage and Love of Life

2011-12-18T22:46:00.000-08:00

I took this picture today as we were leaving the beach. If you look to the right of the tree you can see Mike holding Kate. (Carey's husband and daughter).

I'm so excited that I'm going to have to MAKE myself go to bed tonight.

Tomorrow is my first day in the office at my new job. I've been getting lots of "signs" that things are proceeding in the right direction. Today I was walking on the beach with my friend Carey Steacy and both of our families. We were checking out sea shells, rocks, dead crabs etc. We watched as our children scrabbled across the beach, exploring in wonder. Laughing out loud, running through the sand in the twilight of a Canadian winter afternoon. Kate, Carey's daughter, toddled along through the sand, trying to run, falling several time...wandering around so full of life. I admired her beauty and found joy in the presence of her pure little curious soul. Solara too, was full of life, running around with her friend, anxious to show me each rock, each shell.

I proposed we have a treasure hunt to find our very own beach treasure! I did not imagine that I would find something so fitting and so perfect to fit my needs right now. It was destiny for sure.

I found a piece of clear(ish) bright orange Carnelian. It is a gemstone that is not common on our beaches here in Vancouver Canada. It's super pretty. It looked like a piece of Orange Candy on the ground. I thought that it looked very vibrant and decided to pick it up. It felt slippery and cold all at once. More slippery than glass. Slippery like wet ice. When we got home I looked it up and found out that it is the stone of my astrological sign (Virgo) and that it is a power and courage stone. Here is an excerpt:

A stabilising stone, Carnelian restores vitality and motivation, and stimulates creativity. It gives courage, promotes positive life choices, dispels apathy and motivates for success. Carnelian is useful for overcoming abuse of any kind. It helps in trusting yourself and your perceptions. It overcomes negative conditioning and encourages steadfastness. Carnelian improves analytic abilities and clarifies perception. It sharpens concentration and dispels mental lethargy. Protects against envy, rage and resentment. Calms anger, banishes emotional negativity and replaces it with a love of life. Carnelian boosts fertility and stimulates sexuality. - http://www.charmsoflight.com/carnelian-healing-properties.html

Now I don't really need boosted fertility at the moment but the rest sure fits!

I saw so much beauty today. Anaya was with me all day long. It my heart, in the ocean, the sky, the sun, the clouds, the flying birds...everywhere. She is one with everything. My heart sings with love for her and all of creation.

Goodnight! FundRazr office tommorow! (I get to take the train to work for the first time! EEEEE!)

Please check out my new work Facebook page and my work blog if you are interested in what I do and what I write. I'm excited to be helping people and doing something I'm good at.

www.facebook.com/lovefundrazr

www.lovefundrazr.blogspot.com

Daddy's Story

2011-12-15T23:35:00.000-08:00

Written by Brent for Anaya in the spring of 2011

Cuddle Bug

Oh little cuddle bug
we will cuddle you up
we will cuddle you up
like a little pup
with eskimo kisses on your kissable nose
and tickley kissess on your tickley toes.
With soft little snuggles
when you awake to accompany the smacking sounds
your little lips make.
We will cuddle you up
When you wiggle your feet.
We will kiss you up
as sweet as a treat.
With bubbly kisses for you as you float
splashing in your bath
wtih mews from your throat.
We will cuddle you up
as snug as we could
in a warm soft towel
made of bamboo wood.
Oh little cuddle bug
we will cuddle you so
We love to snuggle you
more than you know, more than we could ever show.
Our last cuddle to share
is the one we love most
followed by goodnight kisses
as we snuggle close.

Good Night Cuddle Bug.

Moving Forward

2011-12-10T10:06:00.000-08:00

Buddha and Angel always wake up happy and excited to start the day. Angel will rush over to me as I step out of bed, her tail wagging madly, knocking against the wall. I reach down to pet her. When she’s got this much energy it’s more like a two-handed puppy rub. Only that will satisfy her happiness to see me and greet me. In turn I always smile. Her love and happiness rub off on me. For that I am very grateful to her. She has given us so many smiles, laughs and moments of wonder since we got her for Anaya in August. I’ve been asked if Angel misses Anaya. I’d have to say that she knows that Anaya is not here, but other than that not much has changed. Both of the dogs still play, eat, nap and show affection. If anything Angel seems to have latched on to Solara.

Yesterday evening I sat on the couch, cuddled in a blanket, talking with my friend Keri. I looked over by the Christmas tree and Solara was wrapping a gift for her friend. Angel sat next to her, absolutely absorbed in watching Solara wrap the paper around the toy. Each time she would reach for tape or scissors, Angel’s gaze would follow, her whole head moving. There is something very special about her. I’d have to say that Angel’s favorite thing is young girl toddlers. Every time we see a little girl Angel will rush over as fast as she can and start licking their face. Now this is not always received well. I’ve had to start being very vigilant to ensure no one gets scared or gets knocked over. Her tail wags so hard that her whole butt wags back and forth. In this way I know that she remembers Anaya. She used to gently get up on the couch next to her and lick her face. Anaya was always interested in puppy kisses. Her eyes would open wide and she would wonder what was going on. I know she was smiling inside. I would put her hands on Angel’s soft furry ears and she would grip tight. Her eyes would move in her expression of wonder and she would make her little noises.

I miss Anaya’s little noises.

People ask me how I’m doing. They are afraid to bring their children over to visit in case it makes me sad. The truth is that healthy children make me happy. Nothing compares to Anaya. Let me re-phrase that. Healthy children do not remind me of Anaya. I’ve already grieved the loss of her health. Healthy children used to make me sad about a year ago or more. But I moved passed it when I accepted Anaya for who she was and what her purpose was and is. My heart tugs towards other children with this disease. I just want to love them and kiss them and cuddle them…but I know that even that will not compare to Anaya. She was my little love, and always will be.

People also comment on my strength and my ability to celebrate her life, and death. To this I can only say:

I LOVE HER

I love her as much now as I did before. Yes I miss her being here. I miss the wonderfulness of her presence. But when I reach inside my heart I can feel our love for each other and I know that she lives on. I believe she still exists. I believe it SO firmly that my sadness is lessened. I know how hard it was for her to live in her body. She couldn’t move, couldn’t play, couldn’t make words. She didn’t get to enjoy eating by mouth and the tastes that we gave her often made her choke. The suctioning of her mouth and throat was a constant irritation and often caused her to gag. She even had trouble swallowing, and at the end she couldn’t breathe. It was painful. It hurt her. I know now that the pain face that she was making was actually a brain-stem response that was a survival mechanism to try to get more air into her lungs. She would take a deep deep breath and then make that face and hold it, then she would let the air out. Taking those deep breaths hurt. They really really hurt.

Anaya needed to die. She needed to move on. She deserved to be allowed to go.
Keeping her alive longer, on life supports, would have been selfish and would not have been the loving thing for us to do for her.

True love does not have entrapments. True love is not desperate. True love is to give to your love what they need. There is a difference between attachment and love. When I set her free, when WE set her free, we let go of our attachment and gave her our pure love. That love surrounded her and helped her to cross the boundary of life and death with honor. That is how much I love her. I love her so much that I could not have done anything else.

In this way my grief seems to be different from others. I view her passing as her greatest achievement. She was so brave and her life was so vibrant. Her spirit is forever and she has changed the lives of thousands. Yes, sometimes my longing for her physical presence is great. That is my attachment to her, coming back up. In these moments I break down and sob my heart out – but it certainly isn’t all the time. I keep going because my purpose isn’t finished yet. When it’s done, I will die too and join Anaya and the countless other eternal souls who exist beyond the borders of life on this level (or plane) of existence. Death isn’t an ending. When you truly believe that there isn’t too much to be sad about. Except of course- missing them. It’s like someone you love has moved to a new country and you know you won’t see them again for a very long time. It’s sad and it changes your life. But you know that it is right for that person and you wish them the best and look forward to hearing about their adventures in the future.

I could CHOOSE to be a complete mess. I could CHOOSE to give in to my attachment and feel her death as my supreme LOSS. But I CHOOSE not to. It is her gain. I’m going to give as much light and love as I can. This is why I still get to see her in my dreams. She is my teacher. She is not lost, only changed.

Did you know that Heaven is a place of rainbows? She told me that God exists in a state of millions of colours and can take any form. God delights in rainbows. I also found out that the more positivity you put into a situation (positive energy) the more likely God is to help you move forward in any of your endeavours. Have you ever had one of those days where you felt good and everything just kept clicking into place? Like you’d think of a friend and then run into them? Or you needed something and found it, etc. When reality behaves like that it is because your flow of energy is in sync with God. It happens to children ALL the time.

And Jesus said “Be like the little children.”

Enlightened people all over the world know that what we think, we become. Choose your thoughts wisely. You are not your thoughts. You are the being having thoughts. Each situation has many possibilities. Allow yourself to view them all before you choose your path. You will know you are on the right path when things begin to happen easily and with synchronicity. Just like in Peter Pan the secret to finding the path in any situation is to “think happy thoughts”. Not just any happy thought. You have to find the positive part of your current situation and focus on expanding it until there is no room for the negative.

I myself have been idle the past week. Many people push their expectations on me without realizing it. They expect me to be depressed, grieving, hopeless and lost. Every person’s thoughts and feelings have power. I am very empathic and can often feel other people’s emotions. I’ve needed to sit with myself and look at my thoughts. Am I depressed? Why am I not more sad? Is it wrong that I am not a mess? Is it wrong that I feel as though I can go on? I’ve been questioning myself, wondering if it is right to allow myself to be happy and go on with life. Is it right to have energy and be OK? I question myself because I value my friends. I value their outlooks and opinions. When they say that “they don’t know how I do it” I wonder if I’m doing something wrong.

Today I woke up and realized that it’s time to end my mulling over these questions. I’ve already told you how I feel about Anaya’s death. She is FREE! I miss her. My life is changed, but it continues. It is time to continue forth with positivity and allow my path to be shown to me.

I am the mother to an amazing little girl named Solara. I delight in her.

I’m going to make a huge difference in the lives of unborn babies with Krabbe Leukodystrophy. I’m going to start by making a series of you-tube videos about the disease.

I’m going to earn a living by helping others. I will be working with FundRazr ( www.fundrazr.com ) as a fundraising educator and consultant. Fundrazr is a Facebook application that works directly with PayPal to help people access their network of friends and acquaintances to raise money for a personal or charitable cause. I will be teaching other people how to use this social media tool as a way for them to get the help they need, when they need it. If you want to raise money for a personal cause please contact me at camara@fundrazer.com and I will help you. I have a lot of personal experience using this tool for health related fundraising. We raised money for Anaya, and now it’s helping to pay for the medical costs of her final days. (She was in ICU and airlifted from Oregon to BC).

I’m going to tirelessly advocate for every child’s right to be tested for treatable diseases at birth. We are forming a non-profit called “Anaya’s Angels” to this effect.

I’m going to reach as many people as I can and educate them not only about newborn screening, but also about what I’ve learned about the progression of this disease from a medical standpoint, as well as caring for a child with severe disability.

I’m going to write and speak about the lessons that I’ve learned and continue to learn from my little love, my teacher. She is the one who showed me the path. I will try to show the path to others.

Love is the way.

That is all.

Shoes of the Soul

2011-12-06T23:49:00.001-08:00

It feels so foreign to me, to be in the world without my little love. I put on my shoes and I stop and remember. The black suede Marmot Trekkers are muddy and graying. I bought these shoes when I was pregnant. I wore them when Brent and I used to cook breakfast at the Village Bakery in Procter. Back when Anaya was a baby in my belly that would always get the hiccoughs.

I was wearing these shoes when I took her to the hospital the very first time. I wore them when they told me she would die of a demyelinating brain disease.

I wore them when we took her home.

I walked her countless times, carried her, soothed her, hell she even threw up on these shoes.

I shopped, worked, cried and loved in these shoes.

I wore them on the journey south when fall hit. I wore them in Salem.

I wore them to the hospital.

I took them off when I climbed into her bed to hold her while she faced her final challenge.

After she flew I put my shoes on and went outside.

The sun had come out. It hit my shoes.

Today I wore them downtown to the lawyers office that is working on sorting out Anaya's bills/affairs and non-profit society.

They were muddy from our walk.

I still have these shoes to remind me of the big picture.

She started out as Love.
She was Love in Form
Now she is once again formless.
All in the space of 2.5 years.

I suppose my shoes will be gone from this world one day too.

Grief can be a sneaky thing. Today I held her gnaw gnaw and sobbed. I held her blankets. I hugged her chair. I stared at my shoes.

The equipment is going away soon. That reminds me...

I have to find a ride for Anaya's stuff that is in Salem Oregon. It's really important. If you know anyone who might be headed north I can drive half way...
We are in Vancouver, Canada.

I wish we had Internet set up here. Another week.. But perhaps it is good for me to do other things for a while.

Love
Camara

P.S- do you have something, like my shoes, that has been with you through good times and bad? What reminds you of the big picture?

Anaya, Forever embedded in my heart.

Grief and longing

2011-12-01T10:21:00.000-08:00

It comes at unexpected times, tearing into my heart, grief. It clenches my body in it's firm grasp and I find I have no urge to resist. I allow it to sink in.

My baby is dead. She is beyond this world now. I cannot hold her and braid her hair. I cannot float her in the bathtub or smother her in kisses. The softest skin in the world is gone, gone forever from my touch. I hold tight to my big soft rainbow froggy (stuffy) and I wrap myself in her blanket and I cry. Sometimes I cry so hard that I can't get breaths between my sobs. The people upstairs always know when I'm crying. I can't hold the sobs back. My grief is loud. My longing to hold my sweet darling is strong.

My heart hurts with her passing. I miss her. I miss the little things that we did together. I miss being her everything.

Every minute is missing something. Every minute is missing her. Caring for her, thinking of her, providing for her took every minute of my day before and now there is only space.

I try to look at the space as a positive thing. I have room now. Brent and I can be alone sometimes. Solara and I can have time, I don't have to deal with that horrible loud suction machine.

But trying to find the positive doesn't always work. Yesterday I saw the suction machine in the storage unit and my breath caught in my throat and the tears trickled down out of my eyes over my cheeks. The grief came on again.

It comes again and again and I know it will. I know that it is healthy and I know that it is normal. What gets me is that I honestly believe that she is in a better place. That she is with God and One with All. She is free and beautiful. She can dance, speak, smile, play and giggle.

I know because her spirit visits me in my dreams.

But those special dreams don't happen everynight. For the past 3 or four nights I've been reliving her death over and over, in different ways, in different places. It always starts out the same. She is alive, I'm holding her and kissing her cheeks, and then she dies. Only the setting changes. It's never grotesque or horrifying but it's always the same ending. When I awake I feel as though I haven't slept and that I have just lost my baby girl.

It makes it hard to focus on the tasks we find in front of us right now.

It feels as though the world should just stop. But it doesn't so we keep moving with it.

Tasks to tackle:

We are moving to the lower mainland. The Vancouver area. We have found a home in Burnaby that is sanctuary-like and peaceful in the midst of the chaos that is the big city. We need to live down here to facilitate our future plans of educating others and advocating for newborn screening. Today I meet with our lawyer and accountant regarding the formation of the non-profit society we are starting to help save babies. I've also got a job offer in the new year that I've accepted that involves helping people during their medical crisis'. These things are better accomplished here in the big city. But my heart is in the Koots. We will return there when the time is right. We miss it there. It is home... we miss our friends too, but we know that they understand.

The plan currently is that Brent is leaving to go to Castlegar tonight on the greyhound bus. He will arrive there at 5am and needs to find a place to hang out until the u-haul rental place opens. Then he will rent a truck and go to the storage unit. He has to find a couple guys to help load our stuff into the truck. It will probably take a few hours. Then he has to grab a couple things from Nelson that our friends have in various places. Then he will drive the U-haul slowly over the mountains to Vancouver. Hoping that it's got good winter tires and that the weather will be clear.

The bus schedule is silly. (UPDATE: Mike is picking up Brent in Castlegar from the bus.)
Can anyone help Brent load the truck? The storage unit is located between nelson and castlegar at Horizon RV and self-storage. We can pay helpers. Call Brent at 778-987-4117 for info.

Friends, will you please bring our houseplants that we left with you to Brent sometime on Saturday afternoon/evening in Nelson? A home isn't a home without houseplants :)

Celebration of Life

2011-11-28T17:23:00.000-08:00

Yesterday we celebrated Anaya's life. It was so beautiful, just as she was.

I'd like to start with thanking all of the people who helped. I wish I had a group picture of the wonderful people who decorated and spent hours preparing for the event. Our whole family loves you all and our gratitude will remain always. You made the setting for Anaya's memorial incredibly special.

The pavillion was lovingly decorated with rainbows and balloons of all colors. The love in the room was palpable. Anaya's spirit was with us, of that I am most certain.

I stood strong for my baby girl

At first I told a story and then spoke about Anaya. Then Brent spoke.

A beautiful slideshow came after that. It was so lovely and everyone was in tears.

Just in time to bring us back up, Carey's video montage of Anaya dancing had us all dancing and rejoicing with Anaya in our hearts.

Baby dancing at Anaya's celebration, definately in the spirit of the event!!

Bobs and Lolo sang some of Anaya's (and mama's) favorite songs, and the rainbow balloons fell beautifully from the ceiling into the gathered crowd of laughing children.

Solara and I with Bobs and Lolo (Anaya is with us too)

The Scrapbook craft table

We had a scrap booking table where 200 pictures of Anaya, a bunch of paper and crafting supplies awaited participants. The most beautiful memories came together from the love of each hand, creating a page for our Anaya memory book.

Solara couldn't get enough of the craft table. She made three different pages of memories of Anaya, herself and I. All of them beautiful. All of them bringing me to tears.

My darling Solara. She has been such a comfort to me. I'm so glad to have her here now. She is happy too. She says she doesn't yet miss Anaya, but that she knows that she is in a better place. I let her know that I understand and that it's okay to feel what she's feeling. When she is ready to grieve I will be here to hold her, and until then she keeps making me smile.

Solara Creating a memory page

There was also facepainting. The joy, laughter and chatter of children was everywhere. Such an incredible tribute to Anaya's life.

Solara, Camara, Rainbow Baby Shand and Meghan Shand

At the end of the event Brent and I surprised everyone by declaring our love and commitment to each other in a simple handfasting ceremony. I'm now married :) Some people would ask why we chose to do it this way and in this timing. The answer is very simple. Anaya was made of our love, and our love was strengthened forever by our experience with Anaya. Our close friends and family were in attendance either physically or by heart, and it will be a day that will remain special our whole lives. We've never wanted a fancy wedding, only something meaningful. And that's what we had.

The Cassin-Potts

I will post photos of our vows when I have some :) I wasn't taking pictures yesterday...

When we arrived home I collapsed into Brents arms and we sobbed our sorrows out together.

Being as how we all have been fighting colds this week, we've succumbed to it. We need rest.

I have so much to share with you, but for now I need to get well again.

Goodnight Readers.

Goodnight Anaya - We love you

Your bright soul shines

so colorful around us

forever you are remembered

in rainbows
and light

Eve of a new day

2011-11-26T12:17:00.000-08:00

Sweet little Angel Anaya has been busy showing rainbows to people all over the world and appearing in their dreams. She has been reassuring people and even appearing to play with children of her fans. She is an amazing little spirit. We miss her so much. Her beautiful face and softness tug at my heart. Her celebration of life is tomorrow and I feel both happy and sad at the same time. My little love has flown to heaven and is free. She would want us to celebrate.

We have found a place to live for December 1. It's in the lower mainland so that we can really focus on educating people and advocating to save babies from this devastating disease. I'm working on publishing the blog as a book and Brent is creating a children's story of Anaya's life to spread awareness.

Can you help us get settled in our new home?
Or maybe just share this link? Thank you.

https://apps.facebook.com/fundrazr/activity/98af0d91609a4faf9388961df0ef46f3?psid=004b30d4505740fdbc84fbbd89cb4f97

Vigilance and Shock

2011-11-23T15:16:00.000-08:00

You don't know me, but...

This is the quote of the past ten days. I have received hundreds of emails that start with this line. It is both beautiful and heartwarming how many people have reached out to send their condolences and tell me how much Anaya has influenced their lives. How they will never forget her.

I could never forget her.

I've spent the last couple of days in a state of quiet vigilance. I'm not sure which way to go or what to do just yet so I'm staying put until I figure it out. I've been praying and asking for guidance, both from God and from Anaya. There are times that I cannot hold back my grief. My heart aches and I feel as though I am suffocating. I even get guilty thinking that I didn't do enough for her - or that we shouldn't have taken her off life support so soon. I feel bad that I didn't take her little baby feet in my hands that final night and given her a massage. I think that I was given extra strength to get through that period of time. I know that we did the right thing and I do my best to quash my negative thinking.

But when I think about her beautiful little body, slowly going mottled and cold I cannot stand it. I feel nauseated with sorrow. I try to focus on the rainbows instead.

It is very apparent to me that death has not ended our connection, but changed it. She asks me to have more faith than I ever have before and to move forward as quickly as possible. I'm willing to do the work - I just don't know which direction to start out in. Should we move back to Nelson? Should we stay in the Lower mainland? For now I think just being present with Solara and spending my time with her, loving her and playing with her is what I need to do. Solara really wants to move back to Nelson. She misses her friends and her school. I am taking her feelings very seriously. I miss Nelson too. Both Brent and I want to do what's right. We want to make a difference and finish what we started. I also know that I need to write. Another message I keep getting from Anaya is that I'm supposed to share what she shows me in my dreams. She says there is more to it than just newborn screening. That there are big changes going on in our world that people should know about.

I almost feel as though I could reach the mama's through writing if I really gave it my all. Once the memorial is over maybe I'll be able to focus more.

The mind of God with Pooh and Piglet too!

2011-11-19T16:31:00.000-08:00

I fell asleep imagining holding her against my chest, using my pillow as something to hold in my arms. I remembered her weight pressing on my ribs and I inhaled the smell of her. I surrounded myself with the love I have always felt when cuddling my little love and allowed my thoughts to drift off into space. Her hair, her cheeks, her eyes that could see, her beautiful heavenly smile. I fell into the swirling moments, mixtures of memories and imaginings. Soon I was lost in my dreams.

I was in the children's hospital in our bed at ICU. I was holding Anaya, and she was dying, but her heart was beating so strong and fast against my chest that I couldn't help but think of a hummingbird. Suddenly the heart monitor flat lined it's high pitched noise and I knew she was gone. I closed my eyes and the beeping of the monitors and the bustle of doctors and nurses were diminished. Be still my heart. I'm coming with you. Suddenly I was falling at an incredible speed and my mind went blank.

I was seeing stars. Not stars like you can see at night. At night you can only see a few million. I could see millions and gazillions of stars, some further away than others. They came in many colors. Red, blue, yellow and white just to name a few. I found myself sitting cross legged on a clouded glass surface. Next to me sat Anaya. She smiled at me. I heard her voice reciting the card that I got her last year for Valentines day.

How do you spell love? Piglet asked Pooh.
I don't need to spell it. Pooh said. I just feel it.

I turned to sweep her into my arms but stopped just before touching her. Her shape was changing. She appeared older than before. She was growing, aging before my eyes. Her hair flowed loosely around her shoulders and her face was thinner, longer. She passed through childhood and became a young woman with blushed cheeks, breasts creasing the front of her white dress. She continued to mature passing through decades rather quickly. Around her eyes were feathers of wrinkles. Long hair shone gray and white. Her hazel eyes looked into mine and she smiled. I could feel her unconditional love, sense her eternal soul and I suddenly felt very, very, young.

Welcome. Her mind-voice was melodic and sweet, yet firm and mature. Awed, and in shock, I responded.

"Namaste" (I see the god-soul within you). She chuckled.

Namaste Mother.

There was a flash of blue and the white gown she was wearing erupted in a fountain of fabric, flying off into the starry infinity. Remaining in the center of a ring of cloth was my Anaya. She stood looking at her little chubby fingers. I remained where I was, amazed at the display. Amazed at her beauty. In the light of the stars her skin was radiant. I could see her incredibly long eyelashes blinking as she focused on her hand. She raised her eyes and looked at me and broke out in a grin. She rushed towards me and I took her into my arms.

Mama! She said with satisfaction.
"Anaya!" You are amazing!" I exclaimed.

I am all of me. She said. You are all of you, too. Here, in this place. It is a place of all that was and all that ever will be.

"Where are we?" I asked, shifting her to sitting on my hip.

Akasha.

I blinked. "Akasha? I've never heard of it. Are we on a different world?" She felt real enough. Her dress was rough against my arms, her eyes sparkled. She reached up and took hold of my face in her hands. They were soft and warm. Suddenly I understood. I understood why sometimes I have dreams of things that happen, I understood why some people can see into the future, and some into the past, and some to different places. Akasha is the place where there is no time. The space between spaces and the consciousness that gives birth to thoughts. The complex and chaotic organization of probability and superposition.

"Where is God?" I asked.

Oh Mama. She pursed her lips and raised her eyebrows, opening her eyes brightly. She looked incredulous and I burst out laughing.

God is here. Standing with us. She whispered into my ear.

Chastened, I peered around. I saw nothing but a gazillion stars, the glass platform, Anaya and myself.
"I don't see anyone." I whispered back.

She pouted and squirmed to get down out of my arms. Setting her down lightly on the polished surface I noticed that her footsteps did not make any sound. She walked towards the edge of our floating platform. Each step she took she got larger and older, becoming again my elder. She raised a firm adult hand and beckoned me to join her.

Look there. Don't forget. She pointed. I turned my gaze on a cloud forming out of the stars. Each speckle of light took up a spot and formed an organized unit of space. It was a window of sorts. The outside shone electric blue and the inside led to a raining grey sky. Through the blue window I could see a name etched on the wet stone.

Sara, Alberta.

There was a clap of thunder and I awoke.

I sat up, dazed. I woke up Brent, telling him I dreamt of Anaya again. He "mmhmmmd" and went back to sleep. I closed my eyes, trying to remember my dream and every detail from start to finish to put down in writing. Who the heck is Sara Alberta? or is it Sara in Alberta? Is it a woman or a baby? Is it now or in the future? There are too many questions.

I got out my computer and searched "Akasha."

"Akasha is the fifth element, spirit. It is the basis and essence of all things in the material world; the first material element created from the astral world, Akasha is that which gives space and makes room for the existence of all extended substances. The word Akasha as an adjective, through the use of the term "Akashic records" or "Akashic library", referring to an ethereal compendium of all knowledge and history. The akashic records have in instances been referred to as the mind of God."

The mind of God.

I tossed and turned the rest of the night. Unable to sleep with the visions revolving in my memory. I don't know what this has to do with me, but Sara Alberta - you are on the mind of God. Maybe I'll get an email from you and I won't have to go out and find you. Now wouldn't that be something.

I got out of bed and headed for the fridge. I needed something sweet and amazing. I reached in and grabbed it. A Beard Papas cream puff. Heavenly I thought as I crunched through the chocolate shell into the pastry and custard beneath. I remembered the time that Brent gave Anaya some of the custard on her tongue. I smiled.

Getting again onto my computer I noticed an entry from a woman named Bunmi. This is what it said.

"Dear mama,

First, I love you. Second, your baby isn't really gone. My friend Emma K. a mom activist in Canada shared your link with me. I was immediately touched and my heart broke. I write for Mothering and decided to share Baby Anaya with Mothering Magazine's website.

Writing this blog was the hardest thing I've written in my career because of the depth of emotion it touched within me. I cried the whole time. I wasn't sad, it's hard to explain, I was moved.

http://mothering.com/all-things-mothering/inspiration/baby-anaya

And yes, sad.

I'm not particularly religious but I am spiritual and try to stay sensitive.

As I wrote, I felt your dear baby, mama. I felt her at my right, watching. She was my editor. I felt the need to send this to you before sharing it on my page. Do you have any edits or additions?

Anaya is so funny. She's a spark, isn't she? As I was writing about The Anaya Initiative, I was going to call it an "idea" and she was pretty insistent about calling it an "organization"- something with more structure, something with legs. Not just an idea. A force, something big.

The quote the end, isn't my doing. Finding the quote took more time than the entire article because your baby doesn't feel as if I take direction very well (she's right). I kept searching and searching for the right quote, kept googling and she was being so patient, like "C'mon now." I could feel the spirit of the quote but couldn't find the words. Until Winnie the Poo! I saw piglet and poo in my mind from behind, holding hands walking side by side the way you too are and will.

Nothing can break the bond between mother and child. It was not created on this earth. It is eternal and real. You are bound together by the same love that rises the sun every day. Let the ache pour out of you- keep expressing it. She's here, mama. She's here. She's so here it's ridiculous. She's like the project manager in her insistence for The Anaya Initiative to move forward. It's a miracle.

I love you.

Bunmi"
Now what really struck me about the article she wrote (other than I didn't take that picture!) was the quote at the end that she says Anaya insisted was the one she had to put there.

"“If ever there is tomorrow when we’re not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart.. I’ll always be with you.”

-Winnie the Pooh

It appears Anaya is linking her spiritual appearance to Bunmi with my dream - using Winnie the Pooh quotes. Only her and I could know what that meant to me.

I think I'm supposed to start a new blog, a blog of my new lessons with Anaya. I feel detached from the memorial planning happening around me. I know that she's not gone. She's just not in her body anymore. We've got to start planning how to get out there. How to tell the mamas. How to save the Krabbe Babies.

UPDATE:
Immediately after writing this I was contacted by a woman named Shannon. At the moments of my sitting and writing she had filmed a rainbow that she could see from her car. Playing on her car stereo in the background is a song from the Winnie the Pooh Movie. These are the lyrics. I will post the video to you tube:

So Long Lyrics

It's not complicated,
Or very hard to grasp,
But every time I see you I laugh.

I wont get too sappy,
I've had no epiphany,
I just enjoy your company.

You test my nerves it makes me stronger,
So can you bother me a little bit longer?

Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend.
Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend like you.

Well I could dot the Is,
And you could cross the Ts,
‘Cause letters alone are lonely.

Well I could be the blossom,
And you could be the bee,
And then I could call you honey.

You test my nerves, it makes me stronger,
So can you bother me a little bit longer?

Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend
Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend like you

Some like to be
Alone independent and on their own
All alone I guess they're free,
but not me,
not me.

Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend.
Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend like you.

Hate to say goodbye, goodbye
And I Hate to see the end, the end
‘Cause it's been so long since I've made a friend like you,
Yes it's been so long since I've made a friend like you,
Yes it’s been so long since I've made a friend like you,
Yes it’s been so long since I've made a friend like you.

Anaya's Spirit Visits Heather

2011-11-16T14:45:00.000-08:00

"I needed to let you know this.

Today after I read camara's blog I was loading my kids up to go to the store for groceries. The wind and leaves were blowing, and all I was thinking about was Anaya. My heart ached for her and her mom.

Suddenly the wind rushed up into a big gust, hundreds and hundreds of leaves swooped together and danced around into this huge funnel. Both my kids stopped and my baby said 'ooooh' and pointed. From the shadows the sun shone through onto my cold cheek. All I felt was Anaya.

I touched my daughter Molly's head and something, I swear it felt like Anaya comforting me it was so bizarre...it told me that my daughter was going to be strong and courageous in her life. I touched my son ricky's head (who has autism), and I felt overwhelmingly 'he will be ok, he will be happy' and I cant explain this and I am not religious but I know it was anaya. I felt her everywhere. She was the wind. She was the sun. Whe was the leaves. I wish I knew how to explain the feeling because in 30 seconds the clouds covered the street again, the leaves stopped, the wind died down. It went back to normal.

I have been rattled all day trying to explain it to my husband....trying to understand it myself. I have had so many fears about my kids being hurt and anxieties over life/people I love leaving in the last 6 months. the comfort that that wind brought was incredible. It felt like Anaya was right beside me, like an adult voice almost consoling me, telling me that my family was going to be fine. I felt total peace. I dont want to bother camara right now but I hope one day she will know that her daughter Anaya, came to me on the wind. I dont think I will be able to see leaves blow again and not think of her."

Heather From Calgary

The Visit

2011-11-15T19:11:00.000-08:00

Last night before I lay down to sleep I prayed that I would be allowed to see Anaya in a dream. To know that she was alright. To my surprise it actually happened.

There was a patting on my shoulder. The patting turned into a tugging on the sleeve of my night shirt.
Mama, Mama wake up! My eyes flew open and to my incredible shock she stood there beside the bed. Her golden hair hung in wavy curls around her chubby cheeks. She wore a simple white dress. She was smiling.

(Not Anaya - but similar in looks)

"You're talking!" I exclaimed. "You're alive! It's a miracle!" I reached down a picked her up. She weighed nothing and lifted into my arms like a feather. She put her arms around me in the sweetest embrace I've ever felt. I burst into tears. Sobbing uncontrollably I blabbered on about how it must have been some kind of nightmare and that we had to tell everyone that she was alive and that God had worked a miracle and that she had been healed. Suddenly I felt her warm hands on my cheeks, she lifted my face so that I was looking into her eyes.

You will see... I heard her voice whisper, although I did not see her lips move. I was entranced looking into her beautiful hazel eyes. They began to change color and I could see the sky, the clouds, the sun, the stars, all flying across her eyes like a time lapse. The picture settled and I could see the reflection of a meadow and a rainbow. Now close your eyes.

I closed my eyes and felt a sense of whirling vertigo. For a moment I opened my eyes and I could see a vibrant swirling rainbow all around that was whooshing by at an incredible, impossible speed. I felt Anaya's presence and her fingers closed my eyes again. Don't do that! She said tartly. I was just so blown away by everything that I couldn't help but chuckle. My daughter, my silent little love, had just given me attitude. The whirling sensation stopped. I felt her little hand grasp mine and lead me forward. You can open them now.

We were in the meadow with the rainbow. My feet were warm on the soft green grass. Wildflowers grew everywhere. There were children running and playing with each other. Children of all nationalities and colors. "Is this Heaven?" I asked, looking down at her.

She raised her eyebrows. Mama, don't be silly. This isn't Heaven. You can't go to heaven yet. This is where the souls go when they are waiting to be born.

"You mean all of these children haven't been born yet?" I whispered in wonder.

They are waiting for their turn. She replied. It occurred to me that although I could hear her voice I still hadn't once seen her mouth move. She tugged on my hand and turned me around.

We were now standing at a large window looking down a white corridor with blue and grey tiled flooring. Along the walls there were chairs and in the chairs there were women of all nationalities and colors. All appeared to be in different stages of pregnancy. They sat as though in a doctors office. Some reading magazines, some on cell phones, some knitting, others sleeping.

These are their mothers. They don't know that their babies have what I had. Tears streamed down her perfect cheeks and her fat little lips trembled. My heart ached.

"We have to tell them!" I reached out and touched the glass. It wouldn't move. I pounded on it. I yelled and screamed hoping they would hear me. Not a one of them indicated that they noticed me at all. I cried in my frustration and sank to the floor.

They can't hear you mama.

"We have to tell them, we have to." I sobbed. She nodded. Her curls bounced. She was so beautiful through my tears that my breath caught in my throat. Once again I was mesmerized by her eyes. I could see myself standing in front of a group of people, behind me was a banner that said "Anaya's Tour to Save Babies" I blinked.

"You're not really here, are you?" I asked, suddenly realizing the enormity of this whole situation.

We are here, I am here, you are here. We are in the space between spaces, in the place where there is no time. I tried to comprehend that and decided to store it away for further thought.

"Can I stay here with you?" I asked. She looked at me with her big hazel eyes and shook her head. My heart sank and I felt desolation and despair. For the second time she lifted my face with her chubby little hands and I looked into her eyes. My tears obscured my vision. "But I need you" I cried, realizing as soon as I spoke it how selfish I was.

Mama, mama. I am with you right now. I am always going to be with you. You have to find the other mamas. You have to tell them. You have to keep going. I will help you. When you need me, pray to speak to me in your dreams. Now close your eyes.

Again came the whirling sensation and the nauseating vertigo. I couldn't feel my body, only an incredible feeling of vastness. I had a feeling that if I opened my eyes I would see nothing and I wouldn't exist. I felt a sense of alarm coming from Anaya and I resisted the urge.

Suddenly I needed to pee. (I know, but it's true). I opened my eyes. I was back in bed. I heard an echo of a whisper.

Believe...believe...believe...

It was no ordinary dream.

Anaya showed me what I have to do. I have to save those babies. I have to tell the mama's. I have to get the word out. I have to keep going.

I searched for pictures online to show you kind of what Anaya looked like in my dream. She did not have wings, nor a halo...but definitely glowed with ethereal beauty. These are kinda similar...

Rainbow Day

2011-11-14T18:21:00.000-08:00

Yesterday was rainbow day. Why? You may ask. Because Anaya crossed over the rainbow bridge, became one with everything and is with God and the Angels.

Three days before I had my very first dream of her dying. The very first one. I was so confused in my dream because I couldn't figure out when it had happened or why I couldn't remember it. The next morning I met a woman who had just lost her baby girl Payton a few weeks before. I spent a whole day with her. This wasn't coincidence. This was the universe and God preparing me for what was coming. I can see it now, perfectly orchestrated. God sent me my dream to make my fears real and God sent Cortney to assure me that I could live through it when the time came.

I held my little love for hours while she was on life support. I kissed her face, her fingers, her toes, her lips. I wiped her tears from her eyes. I couldn't stand forcing her to stay. I wanted to set her free. The hardest part was waiting for everyone to get there. When the family was united we made the decision unanamoisly. We removed her bi pap mask.

She was so relieved she gave one of her "Thank you" sighs. We each took turns holding her. The mask came off at 12 noon. We gave her a bath - her favorite thing! Her sister read her a book. I played with her hair. Daddy played with her toes. As her breathing became more laboured we knew the time was drawing near. I lay down on the bed and placed her in her favorite spot over my heart. There became long pauses in her breathing. Then she would gasp a huge awful breath and let it out in a long sigh.

I love you mama
I did my best mama

I told her how proud I was of her. How many lives she touched. How many babies she is saving. How many parents love their children even more because of her. I told her she needed to go. To stop fighting and allow herself to be carried away by the light. I told her I was sorry I didn't get her to the sunshine. I opened my heart as wide as I could and envisioned the sunshine of my soul enveloping her and keeping her warm. She took her last deep breath and let out the most beautiful baby sigh I ever heard. There was no pain in it. It was the sound of freedom, relief, joy. It was the sound of my baby crossing the rainbow bridge. Her heart stopped and she was gone.

We were all huddled in the hospital bed, holding her beautiful body. Kissing her soft skin for the last time. Touching her hair, her cheeks. I kissed and kissed and cried. All the strength that had infused me during the two hours of the death struggle left me and I collapsed into my agony. The tears poured down my face and I sobbed. I gently cut a braid of her hair that I will always keep to remember her strength, her bravery and her incredible softness.

Oh my baby. Oh my baby. I'm going to miss you...

Please give me the strength to carry on and do what I have to do.

Dear Readers:
We are planning on online memorial service that will be streamed and it will also be re-playable so you won't have to worry about missing it. It will be wednesday or thursday and there's a crew of people working on it and I don't have the exact details yet but I'll be sure to let you know. I do know that the theme is **Celebration! LOVE! Rainbows and Dancing** I want people all over the world to wave their rainbows high and shout their love to the sky. I want there to be dancing I want there to be joy. Anaya MADE IT! She graduated with honors! She did a great job. Let's show her how proud we are of her!

Thank you everyone for your thoughts, love, prayers and messages. Anaya is very well loved. I am humbled to have been able to share her lessons with you. She was my teacher. I was only her messenger.

Setting Free

2011-11-13T12:45:00.000-08:00

They said it will take a while. We removed the mask and are now just giving her love and comfort. Maybe God will present our Angel with a miracle.

-Another

Another

Another moment with my little love. Forever embedded in my heart.

ICU

2011-11-13T08:54:00.000-08:00

This post is short. Time is short.
Anaya's lungs stopped working. I gave her mouth to mouth. We took her to the hospital, hoping it was pnuemonia and treatable. They intubated her in order to keep her alive. They took excellent care of her.

We were transferred to BC chldrens. The new chest xrays show that Anaya is unable to expand her lungs on her own and that it is not pnuemonia. If we take her off breathing support she will die.

Brent and Solara are on their way here. My phone is not working. I'm in the BCCH ICU.

For updates please keep looking at The Anaya Initiative www.facebook.com/theanayainitiative

And if by a MIRACLE of God she surpassess all odds please help us get her to the Sunshine before she dies by going to www.facebook.com/3500Angels and make a donation.

With all our love and prayers

Life and Death

2011-11-11T15:53:00.000-08:00

Anaya was on the brink of death twice yesterday. They call it respiratory arrest. Like cardiac arrest. Only in the lungs. Her lungs stopped moving.

I gave her mouth to mouth. She needed a lot of help. Her face was white. Her lips were navy blue, her fingers and toes where blue. I could have let her go. I asked myself if it was time. I considered just holding her close. I didn't. I went to work with recussitation and I saved her life.
We took her to the closest hospital. She went blue again. They asked me if we wanted to let her go. We didn't.

This time they saved her life. They inserted a breathing tube to get air in and out of her lungs until she can breath again. They took an xray immediately. Her chest xray was awful. Both lungs were completely inflamed and fluid filled.

Immediately we started IV antibiotics and once she had the breathing tube in she could finally get enough air. She woke up and was bright and alert. Oh my baby.

In the past 24 hours she has improved dramaticly. She is instigating her own breaths and her chest x-ray from today is much much better already than yesterday. There is more air and less fluid in her lungs. Praise God. Thank you all for praying for Anaya. It is working miracles.

They say she should be well enough to come completely off the breathing tube within the next day or two. I am hoping and praying that she will continue to be the little warrior that she is and that she will breathe on her own without difficulty once this infection is under control.

I want more than anything to make her final days comfortable and beautiful. I want her to feel the sun on her sweet cheeks and the breeze in her hair. I want her to hear the birds and dip her precious baby feet in the ocean for the first time.

I did an interview today about Anaya and about newborn screening. It will be on KOIN channel 6 at five and I'm hoping it will help to save the lives of babies. I'm hoping that it will help us find more Angels to get Anaya south for the winter in a well cared for environment. At this point I don't care how we get there. I just want what is best for her. I just want to give her joy. She deserves it. She is an Angel of God on earth. Pure innocent love incarnated.

Anyone who would like to contact me (Anaya's Mama) Can do so by calling 503-383-2314 or emailing maraglow@gmail.com. I'd really like to hear from Ellen Degeneres or any other philanthropist that would be willing to help us give this wish to our baby girl. Thank you.

www.healinganaya.com
www.facebook.com/TheAnayaInitiative
www.facebook.com/3500Angels

Write to Ellen about Anaya !
http://ellen.warnerbros.com/show/respond/?PlugID=10

Ellen ACTUALLY checks her own Tweets! Maybe you could take a second to tweet her?
She will see your tweets about Anaya if you include @theellenshow in your tweet!

That's all I can muster. Please God grant us this small thing.
I'm going to cuddle my baby who is ALIVE today and is recovering from this pnuemonia. My little love. My precious baby girl.

Ashes on the wind

2011-11-07T13:14:00.000-08:00

Her breath comes in soft little mews. Her mouth is open slightly, her fat little lips are dark pink, indicating a good oxygen level in her blood. Little blond ringlets spring out from behind her ears, framing her face with a golden halo. My little love. My baby girl. She is so beautiful to me.

Suddenly her eyes pop open wide and she gasps in pain. Her mouth opens wide in a silent scream. I reach over and grab her hand, pressing firmly on the meridians that run to the cranial nerves.

"It's okay Anaya, Mama's here. Oh baby girl, it's okay, it's okay. You're doing a great job. It will be over soon. In a few seconds it will pass." I assure her.

Today is the third day of this. This horrible new development in Anaya's nervous system. It is spontaneous nerve pain. It happens in demyelinating conditions such as MS, and leukodystrophy. I've been told that nerve pain is agony. Please God spare my baby girl. A moment ago I read up on research they are doing on spontaneous nerve pain. Researchers actually induce demyelination in mice and then torture them while measuring their nerve impulses. Reading it made me sick. I couldn't finish the article. Apparently their findings were that using cannibinoids "THC" reduces nerve pain. Anaya's had that medicine before - and we stopped using it because it made her so sleepy and dopey - but then again so does morphine.

The pain passed and she immediately falls back asleep. I stroke her head and give her a kiss. How many times have I kissed her beautiful chubby cheek? How many kisses have I left on her brow? If only each kiss could heal a little bit... I think they do. She is so soft. I often press my cheek to hers, wrapping my arms around her in a hug, just to feel her warm softness. I love her so much.

Today I feel I am failing in what I set out to do for Anaya. I wanted her to be able to enjoy the sunshine and be outside, maintaining her health and quality of life. Instead we are inside while the wind howls and the clouds swirl with the coming rainstorm. Last night we stayed in a hotel room because the acreage that we were staying at became uninhabitable for Anaya when the neighboring development decided to burn about 100 tons of waste brush, leaves, trees and such. The smoke poured directly from the 20 or so burning piles of brush down the hill - directly to where the house and the motor home are. The fire started when I was out. Brent and Anaya had been unable to leave while I was out getting groceries and when I returned we immediately evacuated Anaya out of there. She was having a hard time breathing. As soon as we got her to fresh air her color returned. I called a lady I met recently named Pam who manages a hotel here in Salem and she got us a room in her hotel. The Shilo Inn Suites is known for "Affordable Excellence." The exterior and lobby are clean and humble, however, the rooms are tasteful and comfortable. The pups are even allowed here. We met two chihuahuas in the elevator. They serve coffee in the lobby that is fresh and delicious. They even have a pool. When Anaya is feeling well enough I hope to take her for a swim. She loves the water. Thanks to Pam we can stay here as long as we need to - without spending any of the money we raised for Anaya's new mobile care unit.

Brent has just taken the van to go get some more of our needed items out of the motor home. You wouldn't believe the pile of stuff we have to take when we go somewhere overnight with Anaya. That's why a motor home is so perfect for us. Everything we need is wherever we are.

List of stuff we must have overnight...
Oxygen condenser (40 lbs)
Oxygen bottle filler (30 lbs)
Meds in med bag
Frozen milk in cooler
Clothing for mama and papa
Clothing for Anaya
10 receiving blankets
Diapers / wipes
Syringes
Feeding tubes, bags, pump
Barrier cream
Stoma ointment
Ankle foot orthotics
Suction machine
Computer
Toiletries
Plug ins for suction, feed pump, oxygen machines, computer, phone.
Warm blankies
Anaya's special pillow
Story books.

We need to get Anaya to the south. I've been praying that God will show us the path soon. We already have 200 Angels and we only need 3300 more! That's not that many people! (Our idea is that we would have enough to get Anaya's mobile care unit if 3500 people each give $10 towards it). More people than that attend a single football game. I have faith that things will work out they way they are meant to. I need to remain strong and be patient. Anaya has taught me patience and living in the moment. Right now I am going to practice that.

I am going to braid her hair and read her "The Mouse and The Motorcycle". She loves being read to. Then I am going to massage her little muscles and help to work her joints so that she remains as relaxed and pain free as possible. Her quality of life has always been my highest priority. She is my little love. I would do anything for her, give my life for her. If only it would help her. All I can do is love her and do my best to provide the very best life I can in the time that she has.

I will shine my love on her and keep her warm in bed for now. How I wish it was nice enough to take her for a walk outside.

Anaya's 3500 Angels. It can be found at www.facebook.com/3500Angels

We would appreciate help getting media involved in order to raise more awareness to speed up this process. Not only would this help Anaya - it would also broaden the knowledge base of the public about Krabbe Leukodystrophy and newborn screening.

Mermaids and Puppies.

2011-11-02T10:12:00.000-07:00

It's the little moments that we cherish. The moments where we can feel Anaya's joy. Her happiness shines from her little body and it's easy to imagine her smiling. When we took her swimming at the Dallas, Oregon therapy pool it was definately on of those moments.

The water was so warm, but not hot. It was 94 degrees F - almost body temperature. We were able to stay in the pool with her for almost an hour - which is usually unheard of. In cold water pools she gets chilly so fast. That's why we got her the wetsuit last winter.
It actually fits her now.

She stretched her little body out straight and floated bouyantly on top of the water. She floats so well you actually have to pull her down into the water! A few times she moved her hands and splashed the water. Often we heard her happy sighs and she seldom needed suctioning.

We helped her move her body in the water, swishing and swaying, bending and splashing. It was a full body work out.

After swimming we dressed her and bundled her warmly for a visit to Rob and Dee Dee's house. They had a son who passed from Krabbe. They graciously had us over for a fantastic meal and we got to play with their beautiful children.

I particularly enjoyed my experience with their daughter Jazzy. (Short for Jassalyn) She's four years old with beautiful red hair that falls past her shoulders. Her eyes were striking green and blue with light rims around the iris. She sat and stared into my eyes. Her soul shone so brightly. I returned her stare, smiling. She started smiling too. She crawled into my arms and we became fast friends.

We played tickle monster, we played flip-the-toddler, we played the "what's that" game and she showed me her room. All night she was near me or touching me, sitting on my lap or leaning against me. Her antics reminded me so much of Solara when she was a little girl, just turned four. Her friendship made me happy. I couldn't stop playing with her. It was so much fun. Brent had his hands full paying attention to the other three and both of us took turns watching over Anaya. She slept like a log after swimming. She slept and slept. She didn't wake up until the next day - in the afternoon!

Here is a picture of when we went for a walk at Keizer Rapids Park. There was a big beautiful tree. It was so large you couldn't wrap your arms around it. In fact I think it would take four or five people to get around it. It had mossy roots and reached super high into the sky. We decided that Anaya needed to get out of her stroller and touch this magnificent tree! So I lifted her up and helped her. She touched the trunk of the tree and her eyes widened and lit up. The texture is so different than anything she's touched before. It was a beautiful fall day. The sun shone and Anaya was cozy in her peekaboo beans sweater and her love blankie in the stroller. We walked for about two hours - exploring the forest and the bank of the river. We managed to find our way back to the van and loaded up. We headed back to Anguard. Anguard remains our home base. Parked in the lot of NorthWest RV we remain hopeful that soon we will continue our journey south.

Anaya was a golden retriever puppy for halloween. We had a quiet halloween but it was still fun.

Yesterday we attended the All Saints Mass with Honorary Great Great Grandpa Floyd. It still amazes me that a 91 year old man is in such amazing health. He walks and drives his car. He can hear and is in complete possesion of his faculties. He inspires me. After mass we attended the Marion County Sherriffs Department where they presented Anaya with $400 towards her new mobile care unit. We now have close to $20K.

I have started a new facebook campaign called "Baby Anaya's 3500 Angels". The idea is that if 3500 people (we have that many fans on The Anaya Initiative) were to each donate $10 then we would have enough to buy the new Mobile Care Unit outright and we could get going!! We are also looking into other options. It is really getting cold here. There is ice on the steps this morning. The cold and damp is not good for Anaya. She's already becoming more phlemmy. We pray daily that she will maintain her health. We also give her medicine, vitamins and supplements to support her well-being. Recently we started a new supplement that we hope will boost her immunity and stimulate new cell growth. It's main ingredient is Aloe Vera. We are grateful to Marvin for his recommendation of this addition.

I'm going to go and kiss my little monkey now. She's awake! Have a great day.

Blessings to all of you.

Camara

Check out the 3500 Angels Page!
https://www.facebook.com/3500Angels

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Mist

2011-10-29T09:48:00.000-07:00

The mist hangs lightly over the expanse of gravel. Here and there you can see a trailer, outlined in the fog, but you cannot see beyond them. The massive Oregonian trees in the next field are hidden from view. The fog brings a feeling of closeness. It's similar to the feeling I experience when I am surrounded by mountains at home.

I let the dogs inside from their morning outing. They know that it's still quiet time, and lay down again to sleep. Brent and Anaya also sleep. He cradles her in the hollow of his arm, and she rests there in the arms of her father. Secure, warm and happy. They had a rough night. It was Brent's turn to care for Anaya last night and she had a lot of trouble with her secretions. She needed constant suctioning. He was literally up all night with her. About 5 am I took over so that he could get some sleep before our big day today.

Her breathing was quick and thick with bubbly mucous. I lay Anaya over my chest and reached for the suction, flicking the switch and grabbing the tube with my left hand. Gently I tilt her face upwards, and pull her chin slightly down with my left thumb. Holding the catheter between the fingers on my right hand, I ease it between her teeth and over her tongue. When it gets to the back of her tongue I arch the midpoint upwards, pointing the tip of the catheter down her throat. Timing is everything. She takes a deep breath and I slide it another inch down. Now that it's in position I close the suction control valve with my left thumb, twirling the catheter from side to side with my right hand, while pulling it up and out of her throat. A big gob of thick white mucous fills the tube and I continue to twirl and pull, until all of it has been sucked out, and the catheter is no longer in her mouth.

Her eyes full of tears, she takes a clear deep breath and thanks me with one of her happy sighs.

You are so welcome Anaya.

I love you.

Spark plugs and aluminum chips

2011-10-27T18:42:00.000-07:00

Well, it's been quite a day. Anaya has been having a blessedly awesome day with her secretion management, but my heart is aching. I feel down today. I miss my older daughter Solara. Her smile and radiant love have always been there to cheer me up. Today she is hundreds of miles away with her papa in Calgary Alberta. She's doing well, and she's happy. I just miss her and I just want to wrap my arms around her and hold her. Solara has been so strong these past few weeks. We talk to her everyday, sometimes twice a day. I put her on speaker phone so that she can talk to Anaya. Sometimes Anaya responds with her little "I love you" sighs. Sometimes she just grunts a bit...but hey! What's a grunt between sisters?

I've been trying all day to think of a way we can get back on the road. Today it seems as though our fundraising efforts are stagnating. Everyone I know has helped us out. I've been spending hours on the computer, holding Anaya, and typing with one hand - trying to spread our links through the internet. Trying to reach more people. I think every member of The Anaya Initiative wrote into the Ellen show - but I have heard no response. My pastor (Jim at Kootenay Christian Fellowship) has had lots of calls from Salem residents who want to know if we are "for real". It seems as though these people are very skeptical of Anaya's condition, and our love for her. Jim told me he assured them that he's known us for a while and yes, Anaya's sick and yes, we are for real.

I placed calls to the local children's hospitals and left messages for the seminar coordinators about bringing Anaya in and speaking about her disease to educate anyone who wanted to listen, but as of yet I have not heard back. We had someone from a hospital called St. Judes offer to hospitalize and care for Anaya - and that's the furthest thing from what we want, although the offer was generous and appreciated. A well spoken man named Troy called me, said he was a citizen of Salem and questioned me for half an hour on my integrity and faith. He said he was considering helping us and that he was going to come and visit. But then he never called back, and he didn't come visit. I was deeply saddened that he didn't come by to speak with us in person.

I'm positive 95% of the time. I guess right now is that other 5%. A fellow came by today, he's mechanicly inclined. He managed to get Anguard's engine turned over and running ( what awful racket.) There is such loud knocking coming from the engine you have to yell to be heard over top of it. He did some investigating and found chunks of aluminum had actually been pounded off of one of the pistons. He said it's likely because a valve stuck open and the piston was pounding against it. He pulled the spark plugs out and the one was pushed shut. There's supposed to be a gap in a spark plug. Heck, I was just suprised that he had the thing running. We were told it would never run again. I've got the chunks of aluminum that he pulled off in a ziplock bag. Those are engine pieces. Unbelievable. He said that although he got it "running" it's not driveable. At least one of the cylinders has piston and valve damage that could cause another blow out at any time. Those pieces of aluminum got stuck and stopped the engine when we broke down the first time. As the piston wears away more chunks will fall off and the same thing will happen again. We might make it 5 ft or 500 or even a few miles, but there is no way that Anguard will ever be reliable and safe.

For the second time we've had an engine replacement estimate ($12,000-$15,000) and for the second time we've been told it's not worth it. They said we'd be better off taking that money and putting into something else.

We are flat out stuck.
But we are stuck in a place where we've been surrounded by love and support. So many people have been so kind. I even got a card from a woman who sent her love and prayers and a $1 bill. That meant so much to me. Obviously this woman doesn't have much to spare...but she cared enough to send what she could. Later, I cried thinking about that old woman, wishing there was something I could do for Anaya that would make her better. Wishing I could meet the dollar bill woman and find out more about her life.

There's a reason we are here. Already we have touched the lives of a few, and Anaya has spread her baby love and lessons like seeds on the wind.

Brent is making dinner and Anaya is wide awake. I'm going to try to shake off this dreary feeling and put on some music and dance with Anaya.

We're all on the right side of the ground, after all.

Mama's Call to ACTION!

2011-10-27T08:39:00.000-07:00

This is a MAMA's Call to all other MAMA's! Take action!

(I have written to Ellen about our situation. We need all of the help we can get. Ellen often helps people. We are asking her to help us.

Please help us get in touch with Ellen by clicking the link, filling out the form and saying you want Ellen to help Baby Anaya. You can even use my letter, or parts of it. Here's what I wrote.)

"We are out to change the world - but we broke down!

Our daughter, Anaya, is two years old and has infantile Krabbe Leukodystrophy - a terminal brain disease that is usually fatal by the age of 13months. Over the past two years of taking care of our baby girl we have learned to look on the bright side. Today we are all alive! Today she is still breathing! Today we will give our baby girl the best day possible! We stopped grieving and started living.

We decided that we would take Anaya on a speaking tour and head south. (She doesn't do well in the cold winter). We stop in hospitals, medical schools, children's schools and churches and speak about Krabbe Leukodystrophy, taking care of a severely disabled child, being accepting of kids with disabilities, and our Faith that we all have a purpose to fufill. We also advocate for newborn screening. Anaya could have been treated if she was tested at birth.

Unfortunately our motorhome broke down in Salem Oregon. Our motorhome is our Mobile Care Unit for Anaya. We can't go on without it. The wonderful people of Salem Oregon have taken us in and run a story on us in the paper. We have been speaking in their community and sharing our story and educating people. A local dealership offered us a Handicapped Equipped motorhome for half price. We have raised $12000 but we still need $45000.

Please Ellen, help us change the lives of thousands of people. Take us on your show - or even just send some help our way! http://ellen.warnerbros.com/show/respond/?PlugID=10

With hope,
Camara Cassin
www.healinganaya.com

Now if everyone would please write to ELLEN and tell them that you know I applied and that you want to see Baby Anaya on the show and WHY!

Click here: http://ellen.warnerbros.com/show/respond/?PlugID=10

SHARE! The Anaya Initiative

Do you want to help financial instead of writing to Ellen? Click the Give Button.

Bright and cheerful :)

2011-10-26T10:12:00.000-07:00

Her eyes are wide and they stare towards me. She's listening to the music that is playing behind me on the computer speakers. Female vocals harmonize and sing songs of sea animals. Their joyous and uplifting voices fill the cabin of Anguard (our broken down 1987 motor home). It has been amazing how awake she has been for the past two days. We had started a new medicine to help control her secretions and the dose was too high. She was sleeping pretty much all day and night, waking up only to choke and falling back to sleep. We consulted one of her doctors and decided that we would try lowering the dose. We gave her the lower dose in the morning and again she slept all day...but she was awake all night! The next day we gave her the smaller dose in the evening at bed time and she was awake all day the next day. So that is our new strategy.

Robinol, 1ml, before bed.

She's almost at the perfect secretion level. Not too wet, not too dry. Just right. It's always a balancing act, but one that we are used to. Some days are better than others. The last couple days have been amazing.

Her eyes are darting around now, listening to the music and the sounds of what is going on around her. It must be so difficult to be blind. She must be really in tune with what each sound means. A kitchen cupboard closing, the sound of the screen door, the coffee percolating (one of my favorites), the puppy playing with a squeaky toy - there are so many sounds to hear and enjoy.

This morning we will have bath time. It's one of her favorite things. She stretches out her little body and sighs in contentment. I hold her and allow her time to relax and float in the water. Floating relieves the pain in her joints and takes away from the constant pull of gravity on her little limbs. It's a beautiful sunny day outside and I have a feeling that it's another one of God's Blessed days. Something wonderful is going to happen today.

Anaya's making noises now. It's like she's trying to sing along with the music. She's so sweet! I bend over to kiss her, stroking her angel-soft hair. I tell her I love her. She's having a good day. We are alive and well and it's a beautiful day. Please don't pity Anaya. Please don't pity us. This is the life that God gave her and it has value and a purpose. The challenge given to us is to have compassion and empathy. To show unconditional love and teach and educate others. There is beauty in these moments. We take the time to see them, instead of focusing on death, grief and loss.

To live in the moment, focus on the now, and have faith.

We are still working on raising money for Anaya's handicapped accessible used motor home. (Mobile Care Unit). So far we have raised about $12000 and more people join to help every day. Only 45,000 to go! If you would like to help out please share this post with others! We've been told by Hunter's Hope that unfortunately they can't give us a wish gift. Not because they don't want to - but because their wish gift fund has already been used up for the year. Although we were hoping for that, we won't let it get us down. Hunter's Hope has been an amazing partner for us in our campaign to spread the word about newborn screening.

We still need to get back on the road to take Anaya south to where it is warm and she can be comfortable and go for long walks...and we want to get out there and share our story, and awareness with the world. We believe that God is with us on this mission, and that things will work out the way they are meant to.

Click the link below if you'd like to help us get back on the road.
On the give button below there is a video embedded of the mobile care unit we are trying for. Check it out!

Salem

2011-10-22T21:22:00.000-07:00

It feels like it's been a while since I've written. So much has happened. Where should I begin?
The idea of trying to fit it all into a post seems rather daunting at the moment. I'm exhausted.
I'll try to sum it up.

We were in the Statesman Journal newspaper yesterday. It was a nice article. It has since inspired a few people to stop by the RV sales lot where we are staying and offer their help.

A kind elderly man named Floyd asked us to come speak in his chapel on Sunday...tomorrow, Pam came and stroked Anaya's head, the Davidson family brought us some lovely vegetables, people have been calling and e-mailing with their prayers and good thoughts, and Phil and George invited us to perhaps have the old RV towed to their acreage, as a place to stay while we are fundraising...instead of living in the RV parking lot here at Northwest RV. We love the people here at Northwest RV. They've been helpful, sincere, kind and trusting. Being welcome to stay here has been such a blessing.

All of these people have hearts of Gold. We have met simply amazing people since we arrived in Salem. I'm so thankful that we broke down where we did. We are safe and we have found friends and community.

Tonight we went to a book signing at the H.O.M.E. center. We had a prayer circle with a healing intention for Anaya. We imagined her whole and well, as perfect as she was when she was born. Afterwards she was wide awake and moving her mouth as though she was trying to form words. She was moving her lips and her tongue in a way that is unusual for her - and very exciting for me to see!! It was like she had a taste in her mouth that she was trying to figure out.

She had a bit of a rough day. Angel snuggled with her as she slept most of the day - it might have been because she was up most of the day yesterday. Last night she slept through the night and I thought it was amazing. But then today she slept so heavily that she wasn't coughing up her secretions. I began to worry about that. It began to build up in her lungs and I could hear it rattling around in her chest. I gave her chest physio, but still she slept. Finally she awoke, gave a huge heave and cleared her lungs. Thank God. Pneumonia is always a worry when she gets like that.

Yesterday was amazing. Anaya was awake and aware and so precious all day. She did art and listened to music. :)

Quick update : Through Fundrazr we have raised $970 so far. See below.

You can click the button to watch Anaya's video about the mobile care unit.
Through the Healing Anaya site we have raised $5100. So that's a good start to our campaign. We are open to whatever is meant to be. The path will show itself. In the meantime we will continue putting our best foot forward- love and care for Anaya - and share her story with whoever will listen.

If anyone would like to reach us feel free to email info @ healinganaya.com

If you'd like to help out please click the Donate Button or just stop by for a chat and a hug.

By the Grace of God

2011-10-18T08:14:00.000-07:00

Anaya sleeps next to me on the couch while I write. Her silky blond hair fans out across the pillow. Each breath she takes causes the soft pink blanket to rise and fall gently. My sweet baby girl is doing well. Her lungs are clear. Earlier this morning she was making her little noises for me, with her eyes all wide. She thanked me for clearing out the morning mucous. She's been really sleepy since we started the new medicine. The doctors say that it takes a little while for the body to become accustomed to it and then she will be more awake again. I think that the sleep is probably good for her.

Sometimes in her dreams she moves her hands and feet, makes noises, and occasionally makes a nursing motion with her lips - like she used to when she was still breastfeeding. It makes my heart swell with love and I remember what it was like to hold her close. Having her looking up at me while nursing. Her beautiful baby soul connecting with mine through her bright hazel eyes. Since she went blind we connect in a different way. Being with her all the time I am able to intuit what she needs. I feel her. It's a form of communication utilizing body language signals, compassion and empathy.

Right now I know she feels sleepy :) I'm working on finding some help using my computer.

Anguard (Our motorhome - Anaya's mobile care unit) has gotten us as far as Salem Oregon. Then her engine siezed up and died. We were fortunate to be on a beautiful back road and not on the interstate. The state troopers helped us get in touch with a good towing company, and our AAA coverage had us towed to AJ's Automotive in Salem.

We are keeping a bright and positive attitude about the situation. Obviously God and the universe has a reason for us to be broken down in Salem Oregon! So I paid attention to the little signs that were being shown along our "path". I dreampt we went to church. So on Sunday we decided to seek out a church and see if they would let Anaya and I speak. I chose the "New Thought" church as they sounded small and open-minded. The service was on following the path of your purpose! What a perfect, synchronistic message. I raised my hand and asked if I could address the congregation. Anaya and I moved to the front of the room.

"Hi, my name is Camara. Over there is my partner, Brent. This here is our Baby Anaya. Anaya is a living miracle. She was expected to die more than a year ago. She has a brain disease called Krabbe Leukodystrophy." I went on to tell them more about Anaya's life story...I told them about our search for healing, and the lessons that we have learned. I told them about our new acceptance, about being in the now, living with love, living with joy. I told them about newborn screening and about how all babies should be tested. At the end of my talk I explained that we were now going to be in Salem for a while, as our motorhome broke down. There is a link to the service on the Home Center Website where you can listen to it. We are willing to speak to all types of churches and do not discriminate by religion, race, sex or wealth. This particular center is a New Thought Church.

We had several people come up to us after the service offering a few dollars to put towards the engine repair. One woman offered to let us stay in her house if we are still here in 2 weeks when she goes on vacation! It's amazing what God will put in front of you if you follow the path that you are shown!

Monday came and the Glen and Bob, the owners of AJ's Automotive (really amazing men - honest and kind and good-hearted), came to give us the bad news. The engine is not worth fixing, and the motorhome is not worth a new engine. They explained that in this type of unit the engine ALWAYS overheats, causing expansion in the aluminum pistons that is faster than that of the steel block. The pistons fuse to the sidewalls of the engine. They say that this engine was meant to be in a large pickup truck and they have no idea why Vanguard made such a large motorhome with such a small engine. They say that if we find another engine, the same thing will happen again - it's just a matter of time.

One of the last things my grandpa asked me just before he died was "Is it overheating?"
I said "Not that I've noticed".

"We used to have trouble with that" He said.

I phoned my grandma and told her about the engine trouble with the motorhome. I shouldn't have. It made her cry, she felt so bad about it. I'm sorry grandma, I didn't mean to bother you with it. Don't worry - everything will work out. We just have to have faith and love and live in the moment. God will provide.

After my talk with Glen and Bob we brainstormed about what we could do. Bob suggested we go look at used coaches (motorhomes) for sale and see if we could trade in Anguard for parts. We thought that sounded like a good idea. Brent went on line and one of the first things he said to me was "Look! This one has a wheelchair lift! and the whole thing is handicap accessible!"
"Really?" I said. That would be SO amazing. It would make life with Anaya even more simple. "Why don't we go look at that one." I said.

So we went down to Northwest RV in Salem Oregon knowing that faith would guide us. We were welcomed by a nice young woman, and shown to the RV by the Sales Manager, Kimberly. It blew us away. It is absolutely perfect for living with Anaya. Not only that, it is for sale for HALF of the assessed value due to the economy downturn. Here are the pictures and a video of Anaya trying out the lift.

This is the outside of the Unit. It is a Winnebego Voyage with handicap option. 2005

This is the wheel chair lift.

This is Anaya in her special stroller on the lift

Accessible shower (room for a baby bath tub!)

Front of unit

Bedroom (Lots of space to add Anaya's Bed.) Storage is on wall at foot of bed.

There by the grace of God we go. The motorhome is valued at $112,000. After hearing our story the dealership is willing to sell it to us for $57,000. In faith we have put down $2000, subject to mechanical inspection.

The good people here are going to take Anguard in on trade (not yet appraised) and let us live in Anguard here, while we raise the money for Anaya's new Mobile Care Unit. We have two weeks to raise 55k for Anaya.

I have contacted the Hunters Hope Foundation. We are a registered family with their organization. They Kelly's son, Hunter, lived with Krabbe Leukodsytrophy - the same disease Anaya has. We are working with them to promote Newborn Screening to save the lives of babies. They are able to give Charitable Tax Reciepts to those who donate to Hunters Hope in Anaya's name. Anaya will then be given those funds. This option is for American donors only. It's really wonderful because it means that people and businesses that would like to help out can do so while getting a tax break!!! It's a write off :)

For the next two weeks we are going to fundraise, network, speak and promote with every ounce of our beings. We have faith that if we put the effort in, and follow the path that God has shown us we will succeed and Anaya will have a new mobile care unit to continue to spread love and awareness throughout North America!

We NEED your help! Please help us continue this amazing journey with Anaya!
Spread the word!! Share our story!!
Book us to speak in advance!!

How you can help!:
Needed: volunteers to help organize online auctions of our belongings
Needed: web designer to volunteer to help manage the websites
Needed: people to joing our facebook page.
Needed: contacts and friends in Salem Oregon
I can be reached at 208-946-5234 or at info@healinganaya.com

We can do this. If you went out for lunch today what would it cost you? What about a cup of coffee? Please spare whatever you can.

Our little love is a miracle.

If you'd like a tax receipt please donate through HUNTERS HOPE at
https://secure3.convio.net/hhf/site/Donation2?df_id=1320&1320.donation=form1
When you are on the Hunters Hope donate page there is a spot where you can click to make your donation a memorial or honor. Please make your donation in honor of Anaya Cassin Potts. If you forget this step they will not know the money is for Anaya.

Kissing Anaya

2011-10-18T06:51:00.001-07:00

RIP Anguard

2011-10-17T22:29:00.001-07:00

Anguard will not be carrying us any further.

We have faith that our path is not ending here. There have been amazing signs put out to us.

Anaya's lessons will be shared with the world. Tomorrow is a new day. Please pray that something wonderful will present itself!

Anaya is still healthy and growing like a weed. I just finished giving her a full body massage for two hours. Now we are all going to sleep.

I will fill in the specifics in the morning.

Thank you, God, for the challenge that you present to us. Let us rise to the occasion and see it as an opportunity!

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

The Red Maple

2011-10-15T09:22:00.000-07:00

This morning I found myself walking in a fall wonderland of mist, dew, falling leaves and quiet. The stillness occasionally broke. A dewdrop fell, a bird sang. Buddha, Angel and I tread lightly down the sidewalk, taking in the neighborhood of Home Way, McMinnville, Oregon. Each house sat on nicely on a good size lot. It looks like the people of this area like to keep their yards tidy. Gardens of roses, dahlias, lambs ear, rhododendrons, grasses, sunflowers. There was a little bit of everything. The lawns are lush and green. The apple trees are so moist that they are growing moss. I wonder if the apples like being so wet.

We turned the corner and saw it. It stood out like a flag on a windy day. A giant maple tree, leaves all turned red, stood gloriously apart. The wet, dew covered, leaves, shone scarlet in the rising sunlight. I could not move, so entranced was I by the majesty of it. There by the grace of God go I. I thought and began moving towards the maple. Buddha sat beneath it already, waiting for me. Angel walked by my side and we both turned towards an unusual sound. To the right, across the street there were some tall spruce trees. At the top of one sat an eagle. He was serene and unmoving. Peacefull. The noise was coming from a crow that was harrasing the eagle. Caw! Caw! The crow sqwaked at the larger bird. I watched as the crow flew up to the eagle and tried to bait him out of the tree. He batted him with his wings and flew around him incessantly cawing. He dove and pecked and sqwaked. Angel sat down on my foot and watched with me.

The eagle seemed to be ignoring the crow. He wasn't even giving him the time of day. All of the harrasment almost went unnoticed. The eagle turned his head and looked towards me. For a moment I could see through the eagle's eyes.. I saw a human and a dog watching me watching them. I saw the incredible view of the red maple tree from above and I saw the peace within the woman. The mirror of life. I thought. The moment ended and I snapped back into my body. Standing beneath the red maple I gained strength and knowledge from the peace of the natural world.

We turned and walked back down the street toward Anguard, parked at Kimi and Chad Clark's house. Walking with cheerful peace my eyes took in each flower and dew drop. I saw a beautiful rock garden, full of hens and chicks and creeping Jenny. I saw an immense stand of grass. The feathered tops stood at least 10 feet up in the air. I took in the bumper stickers on the cars parked under car-ports. Co-exist said one. I couldn't agree more. I smiled. We rounded the corner and on the corner lot was a beautiful small grey house. The garden was beautiful. It was private and hedged. There were a plethora of different plants and medicinal herbs growing around a small pond with a fountain. A bird feeder stood near the "seating" area of the garden where there were three chairs and a table. Baskets hung from the house, and plants thrived everywhere in the lush yard. There was not a single blade of mowable lawn anywhere. It was all rocks and perennials, trees and shrubs. It was gorgeous and reminded me of the homes in Nelson. We passed the driveway. In it stood a Prius that had a bumper sticker that said "Buy Local". I could tell that the people who lived here were people who shared some of the same values as I have. The thought crossed my mind What would happen if I knocked on the door and said "Hi! I'm Camara. I love your garden. It's wonderful. You're design is lovely. I just wanted to let you know how beautiful your place is. It exudes a love of life. Have a great day".

I smiled and kept walking. The tail lights shone red on the back of Anguard. What the? I thought. Why are the lights on? I opened the door. "Brent, did you turn the lights on?" I asked.
"No" He said. I went up to the front and pushed the light knob back in. There were puppy teeth marks on it. It looked like Angel had decided to pull the knob out. I hoped that it hadn't been on too long and drained the battery. It would start anyways. There's a button that you can push to use the other 3 coach batteries to start the engine when the engine battery is low.

I tip toed down the hall into the bedroom. Brent lay, facedown in the pillow, hand holding Anaya's. They both slept. Anaya made small noises in her sleep. She was congested and trying to clear her throat. It had been a rough night. It was Brent's turn to be on "Anaya Duty" last night. That means that he's the one who slept next to her and manged her suctioning, positioning etc. We alternate nights. That way each of us gets more sleep every other night. Of course if it's really bad then we are both awake, helping Anaya.

The new medicine has been a mixed blessing. It's called Robinol. At first it thickened her secretions and she had a really hard time. Then she was nice and dry and easy-breathing for the whole day yesterday. Then last night it was back to thick mucous and congestion. I pray that it will even out for her. My heart aches to see her struggle. I know that thick mucous can lead to pneumonia. This morning I have a phone call with the doctor to discuss how the last few days have been on the new medicine. Perhaps the dosage needs to be changed...or perhaps she just needs more time on the meds to balance out.

She lets out a sigh and her eyes flutter. My beautiful little angel. My little Love. I kiss her forehead lightly and back out of the room.

Brent and Anaya remain sleeping. I'm inside the house now, writing and planning our day. Kimi says that their town has a lovely Saturday market. We are going to go and check it out. I may print off some information about newborn screening and take some bumper stickers to sell. It would have been lovely if we could stay longer and speak in the local school. However, we have an appointment in Grant's Pass monday morning, to have a part put in. The manufacturer, Super Steer, is donating the part - which is super awesome! It's about 2.5 hours away from here. The owners of the company are very kind. I look forward to meeting them. There is a chance that I might be able to go with Barbara to a womens dessert tonight...I was told that there is a person there who has very strong healing prayer abilities. It would be nice to have them pray for Anaya.

After Grant's Pass we will head throught the redwood forest and into Northern California. I'm beginning to search out places that would like to hear our story. People that would like to meet our little Love. Our little Anaya. It's still amazing to me how people just open when they come in contact with her innocent presence. Their hearts swell and they feel suddenly as though the world is not as bad as they thought it was. Somehow Anaya renews their faith in life, and in miracles.

Anaya stands out. Her presence is as glorious and beautiful as The Red Maple and as calm and serene as the Eagle. She is love manifest.

There by the Grace of God we go!

Happy Canadian Thanksgiving!

2011-10-09T17:18:00.000-07:00

We are having Thanksgiving dinner with friends in Vancouver. I was asked to cook the turkey and do the stuffing and the gravy. So we've been here all day! When we arrived, with Anaya all dressed up, Jon took some photos of us.

Here they are!

Look at those bubbles on the right!!! She loves blowing bubbles!

And then Anaya decided that it would be a good time to "cut loose." Her whole dress was covered in poop. So was mama! Poor baby girl! Poor mama!

So we changed her into her back-up outfit...a pink sleeper.

Happy Thanksgiving Everyone!

Love will Save the Day

2011-10-07T11:18:00.000-07:00

Anaya's either sick with a cold again or the disease is now causing excess production of nasal mucous. All night she had trouble breathing through her nose. I don't know how many times I woke up to suction her, how many times we changed her position. I can't count how many times I kissed her little face and told her it would be okay. The night was long.

Yesterday Anaya lay in a drainage position most of the day to help her manage her secretions. Brent brushed her golden blond hair until it lay fanned out across the pillow like a crown around her head. I ran my fingers through it, feeling the silkiness of it, admiring it's loveliness. I always thought that little girls with long curly hair were so adorable. Solara was practically bald until after her second year. Anaya's had a lot of hair the whole time. In fact she never really lost any after she was born. It was darker though...it has really lightened up.

Curious George played on the television in the background. Anaya's eyes followed the sounds to the tv and to any onlooker it would appear that she was watching it. I so miss her vision. I miss her looking at me. I miss the way her eyes would look into mine. They were so beautiful, truly the window to her soul. After a person goes blind and mute the eyes are no longer the window into the soul. You have to reach out with your awareness, with your intuition, compassion and empathy, and feel their soul. Most of the time I can tell what Anaya is feeling. She was sure feeling lousy last night. The congestion made it hard for her to sleep, and she conveyed her distress in long drawn out sighs that sounded sad. Even in her sleepy, sick, state she was sure to thank me for suctioning out her nose with a slightly higher pitched sigh that sounded like relief.

One of the countless position shifts last night resulted in Anaya having neck spasms. I massaged for half an hour, but they did not abate. The little muscles on all sides of her neck were spasming and I could only imagine what that would feel like. Her head twitched slightly every second or two. The massage was not helping. I decided to change her position again - to one I seldom use. I fluffed up my pillow and moved her to the middle of the bed, laying her on her side, high up on the pillow. I carefully pulled extra tubing toward her for her oxygen and milk, and lay down beside her. My face was inches from hers. I pulled the blanket up over our shoulders, wrapped my arms around my baby and held her. I stopped trying to think of a solution. I just held her and loved her. I felt the warmth of it spread out from my heart and out towards my arms. I felt the love in my fingertips and the lightness and beauty of it tingling there. I imagined the love flowing over her skin and surrounding her. I opened my eyes. Anaya's spasms had ended. We fell deeply asleep, bathed in the glow of mama-baby love.

On waking this morning I knew she needed to sleep longer. She didn't even move as I slipped from the bed. I noticed her breathing was clearer, although still coming quickly sometimes, and slower at others. I kissed her cheek, again astounded at the softness of it. It's like kissing an angel. She has the softest skin of anyone I've ever felt. She sighed delicately in her sleep. I got up to call Solara.

"Hi Sola! How are you?" I asked.

"I'm good mama, today's a day off school. I'm with my friend Kaitlyn." She said.

"Are you guys going to do something fun today?" I asked her.

"Yeah, well maybe we're going to play at the park or something. Maybe we will jump on the trampoline!" She exclaimed. "Mama, can I call you later? We're gonna go play now."

"For sure." I said. "You can call me when ever you want. I love you sweetie. Bye-bye."

It's good to know that she is having fun and is happy. I miss her so much. She's been at her dad's house in Calgary now for a month. She's attending the school she used to go to when we lived in Calgary. Some of the same children she was friends with as a toddler still live in the neighborhood. She is comfortable, well cared for and happy. That makes me happy. I know that Anaya's needs are high and that Solara needs more attention that I am capable of giving her in our day-to-day right now. Her father's place is the best place for her. She visits with extended family (grandma and grandpa and auntie) almost every weekend. I speak with her at least once a day. But I still miss her perky little smile and her warm hugs. She is my sunshine.

Almost on cue, the sunlight streams through the window as I type and covers my arms with it's warm light. Perhaps God is reminding me that my sunshine is always with me in the love that we feel for each other. We are loved eternally. It would be nice if the sun would remain out today. It's been raining on and off for more than a week. We will be leaving Vancouver soon. Heading down the coast, following the Sun on it's journey south.

Our first talk went well at the Maple Ridge School District Meeting of the Student Advisory Council. We were given a ten minute time slot and in that time Anaya and I attempted to reach out and change lives. We were speaking to about 20 high school students, teachers and the Superintendent of schools. In order to make an impact and get attention I strategized that I needed some props. I filled my hair with clips of many colors of fake hair. The were very bright. I had a rainbow of them. Pink, Purple, Blue, Green, Yellow. I put rainbow clips above Anaya's pigtails.

Approaching the table I introduced myself, and Anaya. There were sounds of admiration from around the room. I heard whispers of "She's sooo cute." and "She's adorable." I smiled.

"What is the first thing that you guys notice about me today?" I asked the gathering.

"Your hair!" They exclaimed, almost unanimously.

"That's right." I said. "I did my hair this way today because I'm here to talk to you about children with disabilities. Like my hair, children with disabilities often stand out. Sometimes they look different or act different than non-disabled people. Often times people will treat them differently because of their disability. I'm certain that if I wore my hair like this to a business meeting I would be treated differently too!" There were giggles and murmured agreement from around the room. Everyone was engaged. I had the attention, the true attention of every single person in the room.

I told them a brief synopsis of Anaya's life and condition. How she was born "normal" and lost all of her abilities. I told them that inside of her is still that little baby who could see and smile and talk. The one who was born to run and play. I reached out to their sense of selves, to what they wanted, and showed them the children with disabilities want the same things. I spoke about inclusion and what it means. Inclusion means treating people with disabilities with the same respect as you would give a non-disabled person. It's about seeing somebody for who they are on the inside. Letting go of the differences that the eyes may see. I also told them about Universal Newborn Screening. I explained that it made sense that we should test for all treatable diseases. They agreed.

After I finished speaking many of the students asked questions about Anaya, and about us coming to speak in their schools. I felt relief. They were interested. They liked it. They wanted more. The Superintendent thanked me, with a genuine sparkle in her eyes. We bid them all farewell and left.

I've been working on developing a profile website and packages to share with schools and organizations about my talks. It's almost up and running. I've been working on it while caring for Anaya. As soon as it's running smoothly I'll share it with you. I've been working on it all week. It includes a map of the towns and cities we will be visiting on Anaya's Walk to Save Babies.

View Anaya's Walk to Save Babies Tour in a larger map

It's one of the reasons I haven't blogged much lately. I've been quite busy. Sometimes I wish I could blog with only my voice, as often my hands are full with Anaya. I sit and hold her and sing to her, sometimes thinking about what I would write if I had my hands free to type...

I would tell you about all of the amazing people who help us everyday. I would exclaim our gratitude again and again. Because of their/ your help we are able to stay with our baby girl. Caring for her and loving her each day. Helping her have the best quality of life possible. Managing her pain and her disease progression with love and intuition. I would like to thank:

Everyone that supported Anaya's birthday bash - the sponsors and the attendees
Everyone that participated or donated to the online auctions
Everyone who subscribes to the blog
Everyone who has given a gift through the donation button
The people who donated their time to help with packing, cleaning and moving
The men who fixed Anguard
Mike Coules for creating Anaya's incredible two year birthday video
Kristel Shimpf and all her helpers for the Healing Anaya Garage Sale
Everyone who attended the potluck or who has visited us here in Vancouver
Everyone who reads the blog and sends love and prayers for Anaya

Living in Anguard, the 35' 1987 motor home allows us to be near her no matter what room we are in. Our expensed are acutally much less than they were when we were living in the house. There are no long stairways to carry her up, no division between one room and the next. No matter where we go we always have everything Anaya needs. Her oxygen equipment, medications, clothing, comfort. Home is everywhere we go. This is exactly what we needed to do. I am thankful for the understanding and support that has been shown to us.

Again I say "Thank you! Being with Anaya means the world to me. There is no place else I could possibly be. My love for her brings me wealth of the soul. Although I am poor monetarily I am rich in love and family."

Saturday of Love

2011-10-01T20:21:00.000-07:00

This was our walk this morning. Anaya was wide awake and she really enjoyed it. She had another rough night, but after getting her meds and some chest physio she was feeling much better!

After that I took a little clip of Anguard to show you :) It's like a small apartment on wheels. I have it decorated colorful and child-like for Anaya.

I didn't have everything all tidy like I had hoped before I showed you all...but it's close and I know you are curious. We have everything we need in our cozy little home.

The potluck tonight was awesome. Anaya had a wonderful day. She was able to sit up in her chair for all of dinner and was awake and alert to meet everyone. We had an amazing spread of food. MMM...we all ate heartily and then I showed the group Anguard. Everyone had nice things to say. The positive energy of the people who attended the potluck was lovely to be around.

You know how sometimes being around a group of people can be draining? It didn't feel that way to me. It felt like a group of old friends. I have some thank You's..

Thank you Carey for bringing "The Salad" - It's sooo good.
Thank you Natalie and Geoff for coming early and helping to set up and clean up...you are a bird of my feather Natty...
Thank you Viviane Bomfin, family and friends, for the gift and the amazing cream puffs. I'll never look at another cream puff without thinking of those ones in particular!
Thank you Sheila and Damiane for bringing the greek and eastern influence, as well as a creamy potato salad.
Thank you John and Tony for being the pot of gold at the end of all rainbows.
Thank you to the children that attended. They were all between the ages of 1 and 3. Seeing you stirred the warmth of my heart. The sadness mixes with the joy and creates rainbows of emotion. Seeing Anaya interact with you and listen to your voices made my day. One day she will run ahead as well...

Most of all I'd like to thank my friend Nicole. She brought me my favorite flowers...sunflowers. Being near her tonight was like going home to my childhood. She reminded me of a time when I was safe and taken care of. Now I provide the safety and do the taking care of... part of me wanted to crawl into her lap and cry. She is so strong and beautiful. Thank you Nix, for the flowers and for the Orca talisman. I will keep it near me to remind me that my heart will guide me safely through...

Home sweet home

2011-09-29T18:56:00.000-07:00

Brent is outside, organizing his tool bin. Buddha lays in the sun and watches while he sets one thing here, and another there. Dogs must really wonder what the heck us humans do with all this stuff. Anaya is laying on the couch beside me. Her little fingers are gripping the edge of the recieving blanket that is tucked under her face to catch her saliva. She is so beautiful and warm, sleeping peacefully there. She just let out a little whimper. She's been "talking" quite a bit in her sleep lately. When she dreams she lets out little noises. She's been quite vocal when awake as well.

She did quite a bit of moaning in her sleep last night. She was uncomfortable. She was having trouble with her secretions and I needed to suction her quite often. The night was long and restless. When morning came I had a hard time opening my eyes. Anaya needed extra special care last night and so I had layed her on my chest, her favorite spot to sleep. Only now that she is so big it makes my lower back hurt. I don't do it as often anymore, because of the pain it causes me...but sometimes she just needs it. We do what we have to do for our children, us mothers of the heart. Try sleeping with a 20 pound backpack on your chest while laying on your back! LOL. I even tried elevating my rear with a pillow to see if it would take some of the strain off of my lower back...but it didn't work.
I focused instead on the sweetness of her. The soft little breaths that became so much clearer, the silky smooth skin of her back. I drew flowers on her back and fell asleep.

When I got out of bed I almost cried from the tightness of my lower back. I stretched and took a Tylenol and it abated. I started brewing coffee and carried Anaya from the bed to the couch. She was awake and alert and interacted with me while I changed her diaper. I sang her the "Changing Diapers, Changing Diapers! So much Fun! So much Fun!" Song and I think I saw her soul smile. I covered her with a warm blanket and went forward to the captains nook to open the curtains and let the day in.

"Anaya, we live in a moving house! Isn't that cool?" I exclaim as I open the curtain. "It's a beautiful day outside. The sky is blue and I can see birdies flying over in the hedge across the street! If we listen really carefully we might be able to hear them singing!" I sit down on the couch next to her and we try to hear the birds - but they are too far away. My toes find little bits of dog food on the floor...so I reach behind the seat beside me and grab the Shark. It's a mini-vacuum. A dust-buster with attitude. Thank god we don't have carpet. I give our floor a quick clean (we only have like 90 sq ft of floor) and sang to Anaya. I filled the bath tub and carried my nudie-baby down the hall. I lay her gently in the bottom of the tub and helped her stretch out her legs. It feels so nice... I can hear her say. She loves the feeling of water. The floating, the gentle relief of her joints and muscles. I wash her in this amazing smelling natural soap that a friend sent us. It smells like edible candy. The scent is "Mango, sugar, mint" but it's just plain delicious! It makes Anaya even more kissable.

I think back to a couple days ago when we first got here. Settling in has taken a while. Organizing things, putting stuff in drawers...not to mention the grief that seems to wash over me every time I think of my grandfather...

This is how it went over the past couple days...

After we parked at Natalie and Geoffs house we decided it would be a good idea for us to have a home base to work with while in the Lower Mainland (Vancouver) waiting to get into Canuck Place. Fortunately Anaya's health insurance covers our accomodation while in the area on medical business, so we moved Anguard to the Burnaby RV park. It is very clean and beautiful and much cheaper than a hotel would be if we didn't have a place to stay. It is well cared for and well planned. There are "Privacy hedges" around each site that are about 8 ft tall cedar hedge. Walking to the main building at the center of the park is like walking through a maze you see on TV of tall, immaculately groomed green hedges. They are even pruned all square and rectangular. There is a laundry room in the main building, as well as a small pool that is quite warm. I was excited when I saw the pool. I thought "oh that is awesome! It's perfect for water-therapy excersize for Anaya!" She's been getting over her cold so we haven't taken her in yet. I don't want to make her worse. There's time enough in the days to come.

Right next to the park there is a trail that leads to Burnaby lake. It is beautiful. The forest is so lush here. Vines climb the trees and surround them with so many leaves it looks like a second skin on the trunk. Blackberries grow madly everywhere, providing a natural barrier along the path. We picked a few and even blended some up for Anaya with her mid-day meal.

Tomorrow we have an appointment at Sunnyhill Health Centre for children. Anaya is being assessed for her occupational therapy needs and her seat will be adjusted so that it fits her again. Her stander is too small for her now too!

Oh, my sweet little love has woken up! I best go.

The start of our journey

2011-09-25T08:26:00.001-07:00

This is our view on the open road. The wind rushes by our mammoth bulk and we cruise along at a whopping 40 miles an hour...slower uphill. That's about 70km/hour. Crossing the state of Washington was beautiful and mostly calm. The traffic was sparse and the freeway was forgiving of our turtle-like progression. Driving through Washington on our way to Vancouver was mostly peaceful. With a moment or two of total stress. But this isn't where we started our journey.

Our journey started here. In the shop. Anguard needed to have an exhaust manifold repaired and some work done on the breaks to pass the safety inspection so that we could be CERTAIN that she will get us where we need to go, safely and surely. Bryan the mechanic worked hard, staying after hours to get her fixed up. He met Anaya. He stood and took in the beauty of her. Her cheek pressed against my shoulder, her long wavy gold hair floating on the breeze. Wiping a tear from his twinkling eye, he stroked his beard and said "It's a damn shame." Then he disappeared beneath Anguard again.

Since Anaya's birthday, no, since a month BEFORE Anaya's birthday every moment has been full and busy. Anaya was very sick with pneumonia and almost died, then we were busy getting ready for her party, then we had the party, then cleaning up and sending out auction items, then packing up the house, moving into Anguard the Anaya Mobile Care Unit, taking stuff to storage, having a yard sale, donating small clothes and toys...the list goes on. It was an intense time.

Finally, with everything done we headed on our way. Our plan was to stop at my Uncle's house in Idaho three hours south of Nelson to visit with my grandparents, and then take the interstate across Washington and up to Vancouver - as a way of avoiding the steep mountain passes on Canada's Hwy 3 which would have consumed more gas and been harder on our new breaks.

Having left Nelson at 6pm on Friday night we arrived at my uncles after dark. We parked and settled in and went to bed. In the morning I awoke feeling an urgency and a need to go into the house. Brent was still in bed with Anaya, they were sleeping so peacefully.

Going inside I noticed that breakfast had already been had and that there was coffee on. I asked my uncle "Where's grandma and grandpa?" He said that they had eaten breakfast and gone back to bed to lay down and relax. I went into their room. My grandpa was so happy to see me. I sat with them and we chatted...I described this scenario in my post "Graduation of Grandpa". Moments later he died. Things kinda went sideways after that. Grief is a hard thing. It surrounds a home and family with it's cold embrace, gripping at the hearts and minds of those who are within. After the initial shock wore off I tried to lighten things up, giving grandma respite from her incredible sorrow by laying Anaya in her lap so that she could feel her calming presence and feel her baby skin and remember that life and death are one. Even as the river and the sea are one. That grandpa is not gone forever. His spirit has been lifted from his earthly body and he is now free and one with God.

Grandma and Uncle Brett advised that we should continue on in our mission to take Anaya to Canuck Place in Vancouver. They said that Grandpa had loved Anaya and that he would want her to get what she needs, and for us to get what we need. After four days at my Uncle's we left and headed west on the interstate.

We didn't get too far before in became apparent that there was a problem with the battery. The headlights became dim. I pulled into a large parking lot to investigate. Turning Anguard off I couldn't get her started again. We had to get a boost from a passing kind soul, and then decided to park for the night and figure out the problem in the morning.

I called the mechanics in Nelson. They advised me that perhaps there was a loose wire or that the old alternator had finally quit. I found shop nearby in Spokane Valley and the manager, Andrew, was very helpful. They diagnosed that the problem was a frayed connection that had caused the alternator to fry. He replaced the alternator and the cable and we were good as gold. Finally we hit the open road. We crossed Washington, we saw windmills...we drove by the Gorge..

It wasn't until we arrived in Seattle that Anaya developed a fever. Brent had been attending her the whole time. Sitting beside her, reading her stories, feeding her, suctioning her...caring for her. We imagine she must have picked up a virus at my Uncle's house as his roommate Debra was sick with a cold. Anaya started to get really congested and was not well. Angel could tell something wasn't right so she cuddle up to Anaya and gave her some puppy love. Anaya loves feeling her soft fur on her skin. We gave Anaya some Tylenol and exposed her skin to cool her down. It was a warm day so we put a fan on her to ensure that she would not overheat.

I was determined to get to Vancouver and Canuck place. We pulled into Bellingham WA to get gas. Fueling up went well. Getting out of there didn't. There was an option to go either right or left. Left went around the pumps and back to the road. Right went around the building and back to the road...or so I thought. I chose right and ended up stuck in a small dead end behind a McDonalds. The young woman who had just gotten off shift was sitting in her car ahead of me, completely blocked in. I got out and went to her window. "I'm sorry, I thought this road went around the building. It's going to take us a few minutes to get moved. We have to take the Van off of the Tow Dolly and then back up and turn around. Brent worked on the Van while I stayed and cared for Anaya.

Finally I turned around, pulling the tow dolly to the other side of the parking lot to put the van back on. Suddenly a lady comes running and waving her arms. Apparently one of the chains from the tow dolly had slipped off, and attached itself to a man-hole cover that I was pulling willy-nilly across the parking lot. AHHHH!

After that I was a bit frazzled. Anaya needed care and it would get dark soon. We decided to stay in Bellingham and move further in the morning. The night was long. Anaya was sick and gurgley. She had mucous coming out of her mouth and pouring from her nose. Her oxygen tubing was covered in a layer of slime that we needed to clean up every five minutes. Come morning in was definately clear that she was over the worst of it. Canuck place called and said that they had to cancel our stay because there was a child who needed end of life care. This happens frequently as end of life patients are priority #1. I told them that it was alright because Anaya had just gotten a cold and we knew that it would be best for her to stay away from the other children, for everyone's benefit. They said that they actually don't allow sick kids...so no Canuck Place for us this week. Maybe next week.

We drove the last few miles to Vancouver and arrived at my friend Natalies house. We parked there for the night and spent a few hours decompressing and caring for Anaya. The cold has already started getting better. She is clearer in her breathing and is more awake. It seemed like she slept for two days.

This is the little princess in her bed that is next to ours in Anguard. My friend Emily made the pillow for her :)

Ever since we moved in it seems like Anaya has been sleeping better. She is comforted by our constant presence and is cared for with love 24 hours a day.

This is us parked in front of Natalie's house. The traffic whooshing by on the one side was soothing overnight. It felt like we were sleeping on a boat. It reminded me of Grandpa...and fishing. He loved fishing and it was one of the last things he talked about. I miss him and am so sad about his loss. But I understand it was his time. His purpose was fulfilled and he has graduated with excellence! :)

I am striving to stay on the positive side of death right now. I must stay strong for my baby girl and my family.

This is Natalie visiting us for morning coffee / tea. I have OSO beans!

Today Anaya is doing much better. We are getting ready to prepare for our kick-off of Anaya's Walk to Save Babies! I have been contacted by an executive director of a local school board who wants Anaya and I to come and speak to the board about presenting to schools in the area over the next two weeks! We are very excited about it and hope to make a real difference in the way children view other children with disabilities.

I'm also beginning to contact the medical schools, nursing schools etc, as I am able to give them a presentation regarding newborn screening and the progression of infantile Krabbe Leukodystrophy - straight from the horses mouth. As this is a rare disease many of them have never heard of it, and many will see it only a few times in their lifetime of practice.

It is incredibly important to recognize the early symptoms so that a child can receive treatment. I will walk them through all of it. I have a science background and I understand the chemistry and biology behind Anaya's disease. I will also bring a human face to it, exploring the depth of love and emotion we feel, and relevance of Anaya's life.

While we are here in Vancouver I have a new phone number. It is @778.997.0593@ please give a call if you have love to share or something important to say :) - Camara

Graduation of Grandpa

2011-09-19T09:06:00.000-07:00

On Saturday afternoon we left Nelson and headed to my Uncle Brett's house, a stop over on the way to Vancouver. My grandparents were there visiting from Calgary. They had not seen Anaya in more than a year. Anguard, the mobile care unit, safely carried us from Nelson to Sandpoint Idaho, a 3.5 hour drive. Crossing the border was simple as we had all of the appropriate paperwork in order. We arrived at my Uncle's at midnight, parked and went to sleep.

In the morning I got up and went inside the house to visit. Grandpa Al and Grandma Vivian were laying in bed relaxing and drinking coffee. Both of them have health issues that have them in bed a lot of the time. My grandma fell down the stairs last month and broke her collar bone and her shoulder.

Walking into the bedroom, grandpa squinted at me and said "Who's that? Oh! It's Camara!" He gave me a big warm hug and seemed very happy to see me. As there were no chairs in the room I got up on the bed and sat cross legged on the end of the bed. We talked about the RV, we talked about Anaya, we talked about their memories of using Anguard for the last 20 years. My grandmother was in the middle of a story about having a trunk of clothing on top of the car - that opened in the middle of the freeway...and we were all having a good laugh.

Then I looked over at my grandfather and his eyes were not normal, his expression was pained and he was not breathing. I tried to wake him out of it but he could not answer me. I ran to get my uncle. We began CPR and mouth to mouth while on the phone with 911. The ambulance arrived and the paramedics and firefighters worked on Grandpa. My grandma layed on the bed beside him, while they tried to save his life. I held her, and when needed I helped the paramedics with suctioning and maintaining the airway.

After a long time, and after trying everything, efforts were terminated and he was pronounced dead. My grandmother is devastated. They are making arrangements for cremation and for a funeral. We will still be taking Anaya to Vancouver to Canuck place as cancelling that appointment would be detrimental to Anaya's health. I'm sure grandpa would want me to take good care of the baby instead of cancelling her appointments to go to his funeral in Calgary, Alberta. Grandma and Uncle Brett agree.

Anaya is doing well and got to have a nice warm soak in a tub yesterday. She is a huge comfort to grandma as it takes her mind off of losing grandpa. Angel and her puppy kisses make grandma smile and I held grandma's hand as she fell asleep last night.

I will post again as soon as we get to Vancouver.

First Words

2011-09-15T22:27:00.001-07:00

Today Anaya and I had our first speaking engagement.... But the day didn't start there...

Early in the morning the smell of skunk began to waft in my face through the window. We were parked in the driveway of Diana's house...and the local skunk must have let loose. Anaya woke up too and made a little noise. I got up, closed the window, used the bathroom, drank a glass of water and went back to bed. It was five am.

Anaya communicated to me through her grunting noises that she was uncomfortable. I ran my hand over her body and tried to figure out what was wrong. She was chilly. The night air had seeped through the thick fleece blanket. Quickly I changed her diaper and rolled her onto my chest to cuddle her and warm her up. We instantly fell back asleep and were woken two hours later to he sound of the alarm.

I rushed to prepare to take Anguard back to the shop. Brent and I loaded a few last items, and headed back to Hywood. Brian, the Heavy Duty mechanic and Matt the Manager were there to greet us. Just a few more things to fix up so that she passes the safety inspection...she'll pass by the end of the day... FANTASTIC.

So we loaded Anaya, Buddha, Angel and I into the van and went uptown. My friend Carol took us out for breakfast and it was truly lovely. It's been a long time since Carol and I spent time together and I have missed her so much. The food was incredible. So delicious. The best breakfast in Nelson is at the Full Circle Cafe on Baker Street. Carol treated all of us to a dish known as veggie hash. Sounds funny I know. But it's amazing.

Two soft poached dark yolked eggs sit atop a mound of freshly fried potatoes and yams, sautéed in a spicy curry sauce. Chunks of goat cheese are embedded throughout the potatoes and the whole thing is smothered in Almond Miso gravy. Mmmmm. Brent and I both commented that it was too bad Anaya was sleeping as she might have enjoyed tasting the gravy.

After picking up some Velcro strapping Anaya and I walked down to see the Doctor. Dr Garcia examined Anaya, gave her a clean bill of health and said she is fit to travel :) She also updated Anaya's prescriptions and now we have enough to last several months.

Anaya has gained weight too :) she is now 10.5 kg. Approximately 24 lbs.

Then we went back to Hywood, gathered a few things from Anguard and hit he road to Castlegar. The drive was beautiful. The highway meanders along beside the west arm of Kootenay lake and then it turns into a river that falls down five dams before Castlegar. It generates a lot of power for both the USA and BC. Anaya, being blind, couldn't see the dams...but we told her about them. Brent sat in the back of the van and held her hand, suctioning her when needed. I drove. I get carsick easily in the back seat.

Pulling into the college 15 minutes early I pull out my study materials and go over them one more time to make sure I've got my facts straight. Only 2 states test for Krabbe. New york and Illinois. BC screens for 22 diseases but not Krabbe. There are thousands of children living and dying of leukodystrophy every year.

Brent lifted the stroller from the back of he van and helped me to gently place Anaya in it. She lay upon a nice fluffy pillow and we attached the suction and oxygen and headed inside.

Mike Coules met us at the door to the class room with his HD video camera. We stood and chatted for a minute as the room was rearranged into a circle. The instructor, Rosalyn Grady, a spiritual elder with the council of 13 grandmothers, welcomed us and introduced us to the class.

Sitting down I found myself facing an entire room full of beautiful souls. I could already feel their interest in what I was going to say. Brent sat directly across the circle from me to lend me his support throuh eye contact. I lifted Anaya from her bassinet and said "Hi, I am Camara and this is Anaya. Anaya has Krabbe Lekodystrophy." I then launched into telling her life story.. The ups, the downs and the incredible lessons and love we have learned from her. I spoke about newborn screening and stem cell treatment. I spoke about depression and relationship issues that can occur in parental relationships of children with special needs. I spoke about the family dynamic and Anaya's beautiful and healthy older sister, Solara. I spoke about everything.

When I was finished half the class was in tears. They then took turns telling me what the learned from what I had spoken about. It was beautiful and gratifying. We made a big impact today!! I set out some bumper stickers and just about everyone in the class gave a financial gift and took away a bumper sticker. :) How awesome is that. I brought them just on the off chance somebody might want one. I had no idea how popular they would be.

After that we went home to Anguard, took the dogs, and Anaya for a walk

and found a place to park for the night. Whew!! Long day.

Anaya is complaining with a little whimper... I'd better check her tummy. I will post video of our talk today ASAP :)

Lots of love to all of you.
Goodnight.

Location:Castlegar, BC

Anguard

2011-09-13T21:55:00.001-07:00

Her fingernails have gotten long again. I only noticed now, seeing her in someone else's arms. When I'm holding her I see her face, mostly. I sit and rub my nose against hers. She has a petite little nose. It sits cute and perfect above her fat pouty lips.

Oh her beauty astounds me. Her sweet innocence, her wide eyes and golden angel locks. She sleeps beside me while I type this on my phone.

Last week a photographer named Carol came and took pictures. She had contacted me offering a sponsored photo shoot. She came from 8 hours away just for us! She got some really lovely pictures. Anaya looked so cute that I snapped a few too.

The sunflowers were procured by myself. I saw them in a yard on Latimer St and stopped in to tell the owner my idea, and ask if we could have some flowers. She Said yes and away we went!

The past few days has been really interesting and totally hectic. Imagine moving from a three bedroom house into a studio apartment... That's what we are going through. Anguard, Anaya's Mobile Care Unit, is like a bedroom, bathroom, kitchen, livingroom, all within 20 ft.

Anaya's oxygen machine is purring quietly in the background. It reminds me that we still have a small pile of stuff to bring in and put away. packing and unpacking. It goes on and on. Thank god for good friends like Nancy Ryde and Christina. Id be a mess if it wasnt for them.

This past weekend we had a yard sale and sold a lot of the things we don't use anymore to raise money for Anaya's care. I tried to sell my pottery kiln but didn't have any takers. After the sale died down we put up free signs and everything else disappeared overnight. It's a good way to recycle stuff. People like it too. It feels good to give back to the community. I gave a lot of Anaya and solara's old clothes away to children who needed them. It felt great. I kept some special items for an online sale too. I think we'll do it in November.

Tomorrow Anaya and I have our first speaking engagement at Selkirk College in Castlegar. I'm hoping that it will be awesome. I will try to have someone film it or tape it so that you can hear too.

I'm headed to bed. Morning comes early lately.

~Another day in paradise, another moment with my little love. Forever embedded in my heart.

Location:View St,Nelson,Canada

Brief Update

2011-09-11T21:00:00.001-07:00

Anaya is still doing very well. Her breathing is clear and she is comfortable and happy. The past few days have been a whirlwind. Sold a lot of our belongings in a yard sale today.

I'm so exhausted I can't think what to write about.

This week is very very busy and it may be a few days before I get time to write again.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Happy Breaths

2011-09-07T08:20:00.000-07:00

Upon awaking the first thing I notice is that I cannot hear her breathing. The usual gurgle of her inhalations is not present. Concerned, I pull the covers back from her sleeping angelic face and watch her chest. It's moving in a regular rhythm. Up, down, up down. Putting my ear closer to her face I listen...

Her breath, peaceful and quiet, draws in. My ear is so close to her nose that I can feel the air moving near my ear. She exhales and it's so clear, so perfect. So normal as to be abnormal. I smile to myself and the happiness begins to radiate through my body like anticipation on Christmas morning. It starts in my smile, spreads into my jaw, my forehead, down the back of my neck, shooting down my spine. I feel like I could jump up and down shouting "I won! I won!" but of course, I didn't do anything. Anaya's the one winning! She continues to defy the odds, even getting healthier than she was before. I swear she also has a new level of alertness. She is learning more and more and growing into a little toddler.

Anaya rests on, sound asleep. I put my finger in her hand and she squeezes it. This is a new thing, this holding of things with her hands. She just started doing it a few weeks ago. For more than a year her hands were limp and pretty much devoid of "grip". Now she will hold just about anything you put in her hand if she likes the feel of it. She holds her Gnaw Gnaw, she holds her Bambo doll, she holds the edge of her blankie, she holds my shirt collar, holds the edge of the bassinett. Sometimes I catch her holding her oxygen tubing or her feeding tube. Lets just hope she doesn't start yanking on them and hurting herself!

It's only six am, but I'm wide awake. Anaya's quiet breathing woke me. The happiness and excitement I felt about her breathing would not allow me to go back to sleep. I slipped from the bed and headed downstairs with the intention to blog. Angel greeted me from behind the puppy gate in the kitchen. Her fluffy golden ears and brown eyes accentuated her puppy smile. She wagged her little tail and barked a little Good morning! Love me! Love me! I need to go outside! Play with me! So I picked her up and took her outside. As soon as we hit the grass, she peed. I praised her. We walked around the house to where Anguard is parked. Passing the saw table and scraps of wood strewn near it, we approach the RV. I opened the door and stepped inside. Angel sat at the bottom of the step stool we use for steps, looked at me and whined. I stepped down.
"This is what you do," I said. "this one and then this one and then this one." I tapped each step in sequence. She seeemed to catch on really quick and got up the steps on her first attempt.

This is looking so much better. I thought, looking around. That laminate will be so much cleaner than having carpet. I don't much care for pink carpet anyways. I walk down the hall towards the bedroom. Brent was up until I don't know what time working on the bed patform. It looks good. Small pine rails criss cross the room in a frame, leaving room for storage beneath the bed. The section for the queen mattress is butted up against the section for Anaya's mattress, making one large bed, with her mattress being half as long, which leaves room to stand near the opening of the room, where the closet is.

Smiling to myself, Angel and I head back towards the door. She finds a ball of tape remnant on the floor and charges at it, gripping it between her teeth and shaking her head with puppy vigor. I laugh out loud when the tape sticks to her face and the surprised look on her face is just priceless. I help her remove it and we head back to the house.

Today is another big day. At eight thirty Anguard is going into the shop to have mechanical repairs. Toyota is sponsoring much of the labour costs, as is Hywood Truck. I hope that the repair goes quickly so that we can finish the bed platform and get moved in. The RV is like a Mobile Anaya Care Unit. It's the size of a very small one bedroom apartment. There is a milk deep freeze behind the passenger seat, the oxygen machine straps to the wall beside it. Brent plans on building stabilization shelves right near the bed for the suction and nebulizer. Anguard even has an Anaya sized bathtub.

Entering the house I glance around. Holy cow I need to pack. Everything that is not going into Anguard will either be sold in a yard sale or put in storage. With all the things going on this past month I have not been able to keep the house tidy. It's clean...but there is stuff out of place everywhere. I peek into the bedroom. Brent and Anaya are still sound asleep. Quietly I go back to the kitchen and brew a pot of OSO coffee. MMmmm. I love it so much. It makes my morning even more awesome.

Pouring the first cup I admire it's dark golden flow. Steam and coffee aroma rise from the cup, tickling my nose and enticing me. I think I could write a short story just about drinking a cup of OSO lol. The first sip bites at my senses and snaps me to attention. Caramel undertones a just roasted nuttiness that sends tingles through my tongue. I take my OSO over to the couch and start writing.

"Happy Breaths"

Godsend

2011-09-04T14:48:00.000-07:00

What a beautiful day! I sit on the grass in the shade with Anaya beneath the awning of Marty and Christine's RV. It's a work party day. The men (Brent, Grant and Marty) are all making quick work of the interior of "Anguard" The RV. It's got so much character that it needed a name.

Our new home on wheels will take our family safely to Canuck place and on Anaya's Walk to Save Babies. Even though it's old it's in decent shape. The guys cut out three different wood sections that had rotted away and put new plywood in. The problem was that the windows were leaking. Grant used to build houseboats, which have similar windows. He said they just needed to be resealed. He picked up a roll of window sealer and is currently taking each window out and resealing them.

Marty worked on the bedroom floor.

And Brent is working on the wall under the window by the dinette.

Christine is a nurse and her and I are watching Anaya. I'm super excited because Marty and Christine booked me a massage this afternoon! Its been forever. Christine is super nice.

I feel so much gratitude in my heart to have met these wonderful people. Christine reads my blog and contacted me about coming to visit to help out. Of course I said yes! She took this picture of Anaya and I.

So things are coming together and getting fixed. We are excited to begin this new journey. Anaya's Walk to Save Babies is going to change Newborn Screening in North America. Not one child should go untreated for a treatable disease.

Anaya's Life Makes A Difference!

Life Is SWEET!

Anaya is doing so well today! She even held her head up! She seems to be over her cold. Her big sister heads out to Calgary today to stay with her dad for a while. We are sad to part but I know spending some good time with Kristian will be good for her. He has lots of time and lots of energy. His positive outlook on life is admirable.

This is a pic of Anaya and Brent.

Daddy's love their baby girls!

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

A Summary of Summer!

2011-09-01T10:12:00.000-07:00

written by Natalie Degoey.

It began with a trip to the Humuh Monastery, where Anaya met a real live enlightened being, the Wisdom Master or “living Buddha” of the monastery, who had many wonderful things to say about Anaya’s purpose in this life.

While Anaya and family were visiting the interior of BC, she developed pneumonia which was misdiagnosed as a cold, and developed over the next weeks into a very serious and life-threatening illness. Her family decided, with input from her doctors, to take her home for her final days. This decision caused tension with the nurse who had been helping the family, and ultimately they ended up without any nursing care, a situation that still is not resolved. We almost lost her a couple of times, but are happy to report that she has made a full and miraculous recovery, thanks in large part to the tireless care and attention provided by her entire family, and also thanks to all the love and prayers that she received from her supporters at The Anaya Initiative. We truly believe that this focusing of so much positive energy on one little being is a huge part of what has kept her going for so much longer than most babies with her condition!

As a testament to how she is thriving, Anaya was recently lucky enough to celebrate her Second Birthday!! This is truly incredible, as most Krabbe babies are not allowed to stay with their families on earth for longer than one year, never mind two. Anaya is a miracle baby, and in honour of that, her family celebrated in style, with a big Birthday Bash at Lakeside Park in their hometown of Nelson, BC. Almost 100 people attended in person, and thousands were there in spirit, from all over the world! Fundraising consisted of a live silent auction, and several concurrent online events, including auctions run by JustaWeeBab and Blissful Creations by Lyz, and an ebay auction of a one-of-a-kind Bamboletta Doll. These Waldorf dolls are prized by collectors, and the adorable Leila brought in over $1500 all on her own!

Thanks to the generosity of all Anaya’s international family, we were able to raise enough money for Anaya's care and to begin to plan Anaya’s next adventure, Anaya’s Walk to Save Babies, details of which will be shared over the coming weeks. It involves a tour from Nelson to Vancouver, and down the coast into Washington, Oregon, and California, spreading awareness about newborn screening for Leukodystrophies, and teaching kids about people living with disabilities! Along the way, Camara will be blogging about their adventures, with the goal of creating a book about their journey. To kick off Anaya’s Walk, she will be receiving a week of care and attention at Canuck Place Hospice and BC Children’s Hospital in Vancouver. There, Anaya will have some assessments done, and the rest of the family will get some respite time to focus on preparations for the next leg of their journey together!

Anaya will be visiting friends all along the West Coast of Canada and the US, so if you would like to meet her and her family, or if you know of a school or other organization that would be interested in learning more about Leukodystrophy (and other demyelinating conditions) or living with disabilities, please get in touch.
You can reach us at 1-888-936-9930 or by email info at healinganaya dot com.

Packages can be sent to our administrator Natalie Degoey (who will forward them to us) at: #5, 6670 Rumble St, Burnaby BC V5E 4L4.

Mail can still be sent to 1111 Hall Mines Rd, Nelson BC. V1L 1G5

Healing Anaya Video

2011-08-28T10:41:00.001-07:00

Anaya's Second Birthday

2011-08-28T08:35:00.000-07:00

August 26

The day dawned around six am. The sun began to fill the sky with light. Peeks of it flitted through the cracks of the bedroom curtains. Stretching out and blinking I remembered that today was a very special day. I pulled open the curtain and looked at my little love sleeping softly on the bed beside me.

I kissed her forehead and whispered "Happy Birthday Princess". She slept on. I rested my lips on her and took a few deep breaths of her beautiful baby smell. The love that I have for her infused my heart and my being with joy and energy and I began to think of all of the things we needed to do to prepare for the party that was happening in the evening. I took a picture of her as she opened her eyes on her special day.

Good morning little love! I sang to her. I smothered her in kisses and sang her the happy birthday song. She seemed to know that something different was going on and she opened her eyes a little wider.

Gently I brushed the hair from her face and ran kisses from the edge of her lips all the way up to her cute little ear. She smelled of mango, sugar and mint butter that a friend sent for her a couple days ago. Oh..it smells amazing. It smells edible. We made jokes about how she smells good enough to gobble up!

"It's time for a shower!" I tell her and Brent undresses her and brings her to the shower. I found a shower chair at a second hand store that is big enough for her to lay on in the shower. We set her on it, on top of a towel and I pass the warm water over her with the detactchable shower head. She loves the feeling of the water tickling her skin. She sighs as I run it over her head and down her back. I hold it on her neck and shoulders for a while. The are always so tight lately. I lather her up from head to toe with Earth Mama Angel Baby Wash that smells of oranges, rinse her off and pass her out to her Daddy who is waiting with a towel.

Baby in one arm, suction and oxygen in the other, Brent takes Anaya back to the bedroom and puts a diaper on her. I meet them downstairs and we decide what the little princess is going to wear for the start of the day. We choose a sweet little outfit that arrived a few days before from Lori and Irie. It says "Birthday Girl!" and the pants have cupcakes all over them. Once she is dressed I set her in her special chair and braid her hair. I think I did a decent job of it and she looked adorable.

Next we began carrying things out to the RV that we were taking down to the park. We decided it was the best vehicle to take because if Anaya needed a nap or some private space it would be accesible. Not to mention that we had a whole ton of stuff that needed to go to the park for the party. So we ate a quick breakfast, loaded up the RV and went down to the park.

Immediately we ran into a problem. There was a class booked all day in the BBQ shelter. I spoke to the teacher and told her that I had booked the BBQ shelter for the day, for Anaya's party. I explained to her that we would be cooking and setting up all afternoon. After I told her about Anaya and about how important this day was she conceeded to move her "babysitting" class of pre-teens over to another area of the park. We helped her move the tables.

The Big Tent Event Rentals man (Buck) and Doug from Hairy Productions Sound came and set up the "stage" for our live preformers. April came and decorated the shelter. Brent and Kristian went to get more tables and the TV for the auction. Larissa arrived and we started setting up the silent Auction items. Nancy Ryde came and saved the day by cooking up all the meat and beans we needed to feed an expected 300 people. I ran back and forth from Anaya to the auction tables to the BBQ to the stage to see what things needed doing. My friend Ray helped me by staying with Anaya while we got set up.

At 3:30 the first musician showed up and started playing. Sebastian sang some beautiful songs in spanish.

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The teacher with the babysitting course was a bit upset by the "noise" and asked us to turn it down. It was pretty lame but I understood. There had been a misunderstanding somewhere along the way and we needed to comprimise to keep each other happy. I ran to get Anaya out of the RV and dressed her in her lovely pink birthday dress. Initially I had her in her stroller, but almost immediately had to switch to the wagon because her secretions were a bit wet.

Ruby of "The Fable Cottage"

More people began arriving around 4 and then The Fable Cottage began singing. Her music was lovely. No one was really dancing so I decided to pick up Anaya and dance with her. I removed her oxygen for a few moments and kept an eye on her lips to ensure she was breathing ok. Here is us dancing on her birthday. Ruby is singing in the background.

The afternoon began to blur after that. I pulled Anaya around in her wagon caring for her while greeting people and trying to ensure that everything was running smoothly. My stress level was a bit high and I struggled to remain grounded and focused in the here and now. Eventually I just held my little love and took some deep breaths and it helped. But I still had anxiety. Here are some pictures. A lovely young couple came and ran some kids games, unfortunately I didn't get any pictures of it!

The Stage

Anaya's Incredible Cake made by Allison Schlosser

Anaya and I listening to music in the shade

Angel decides it's time to cuddle Anaya

Angel and Anaya listen to music together.

Anaya's Cake, Angel and Anaya (in Wagon)

Sleeping babies.

It's my party and I'll sleep if I want to!

So cute.

Anaya got the first piece of cake. But she was sleeping during the song..
I sang her happy birthday over the P.A.

What a wonderful birthday!

We had some incredible music by "Mountain Station" a folky jazzy band. I didn't get pictures of it though...they were amazing.

We had an incredible Video put together by Mike Coules of Mammoth Productions. Everyone watched it. Some people cried. It was incredibly well done. I'm uploading it to You tube as we speak.

The Live auction happened just after the cake. Most of the items sold for half of their value. For example the helicopter ride for 4 (value of $400) sold for $120. There were less than 100 people at the party. I had hoped that with all of the media attention Anaya had been getting the past few weeks that more people would show up, and that our auction would be more exciting. We had very few bids. So items in the auction didn't sell. I still have some things that I will put online and try to sell them that way.

Adham Shaikh, a local DJ and electronic music artist began playing after the live auction and his music inspired people to dance. He was a very grounded soul with loving eyes and a calming, cheerful presence. He thanked me for inspiring other mothers. I thanked him for creating my favorite song. It's called "The climb" and it so clearly illustrates my life in music.

The people that showed up were incredibly loving and supportive. I have so much gratitude in my heart to the people who made it a priority to come to Anaya's party. It was a beautiful and sunny day and Anaya was healthy and strong and enjoyed the whole thing.

Last to play was the Nelson Samba band. Holy MOLY! I should have had them play first. Maybe their loud beats would have brought more people to the party. They were AMAZING. I simply don't have words to describe it. I wish I hadn't been so tired. I had hoped to dance to their music and spin some fire but I was simply exhausted and I remained with Anaya in the RV at that time. It was dark and we were trying to clean up the silent auction. So many items were unclaimed that we had to gather them all up and put them in the RV.

The rest of the night was a blur. I remember getting home and falling into bed. The next day I worked all day on auction items and organizing. In the late afternoon we took the kids to the lake and jumped in because it was so hot out (35 celcius, 96 F).

I'm still busy trying to call people to pick up their silent auction items that they won. I also need to get my thank you's out to everyone that contributed to the event. The house is a disaster,the yard is overgrown, the RV is full of unclaimed auction items..lol. It's okay. It will all come together. The main thing is that the day was a beautiful success and that Anaya is so healthy and alert and concious.

We have recieved some beautiful packages and cards for Anaya in the mail and I thank you all. Please accept my apology for not thanking you each individually. I simply don't have the time at the moment. Rest assured...your gift has arrived, and we are so thankful that you took time out of your life to think of our little love.

Anaya is doing so well. She has just woken up and I should go and welcome her to the Day.

LOVE!

Busy Birthday Eve

2011-08-25T23:11:00.001-07:00

A story in pictures.

Puppy Love.
Anaya and Angel

-

With Valencia (Ray)

With Grandma Marlene.

Another day in paradise, another moment with my little love. Forever embedded in my heart.

Anaya Initiative QR code for profiles

2011-08-23T14:36:00.001-07:00

The day Jack Layton Died

2011-08-22T19:57:00.000-07:00

A truly awsome human being graduated from this lifetime today. This morning Canada's leader of the opposition died. He was fighting cancer. His last words, written in his own hand, to humanity were these:

"My friends, love is better than anger. Hope is better than fear.
Optimism is better than despair. So let us be loving, hopeful
and optimistic. And we'll change the world." - J.Layton 2011

Today was one of the best days of my life. My house is a disaster, the lawn is unmowed, my hair looks like a tragic accident and I have bags like a raccoon. But the thing is that today was absolutely amazing anyways. Anaya and I both slept well last night and woke up refreshed. I spent the morning getting things organized from my computer and on the phone and then I got Anaya ready and took her on a walk.

Brent came outside and helped me get her down the stairs. Her secretions were good enough today that she was able to sit up in her stroller without choking. Our dog Buddha follwed close behind me at a safe but respectful distance. I never have to worry about him running off any more. He has really come along since we got him 4 years ago. I told Anaya about the houses we were passing. I just kind of rambled on about each step of our journey outside. I smiled and beamed love at Anaya as we walked.

How beautiful she was. How awake she was. How incredibly concious and aware she was. I had to stop and take a picture of her. She was just so beautiful. This was the first time I got to take her out in her new pink stroller. The manufacturer replaced the black and grey one on warranty because the wheels were no longer turning properly. While it's still not a "special pediatric stroller" it certainly did the job today. We tied the oxygen bottle to the back, where it hung in it's blue bag. The suction I hung from the pushing handle. I used various things to support her head.

As we walked along with the dog, Anaya and I both marveled at the warmth of the sun on our faces and we rejoiced to be out in the fresh air.

We stopped at OSO Negro coffee house where they have a jar for collecting donations for Anaya. The barista's cooed and ahhh'd over her and she showed everyone her beautiful eyes. Most of the time she had her gnaw-gnaw in her mouth, she wouldn't let it go!

We walked over to Cowans office supplies and had some posters printed for the birthday party. While we were waiting for them a man came up to me and talked to me about Anaya. He said that every time he drives by our house with his kids they all point and say "Look! It's Anaya's house!" He asked how she was doing and I told him that today was our best day in a LONG time and that I couldn't be happier. I only had to suction Anaya a handful of times and she didn't turn blue ONCE!! I asked him if he worked at Cowans and he told me he was one of the owners. I told him I was having some posters printed. He said "I know, can I donate those to you?" I smiled and said that would certainly be appreciated. The poster is a beautiful one. It was designed by Paddy at Big Cranium designs. It is so perfect. So fitting. The hearts surrounding Anaya's sweet little angel face are so cute. Thank you to Cowans and Big Cranium.

Continuing our journey we started up one side of Nelson's downtown street, Baker St., and then went up the other, handing out posters to store owners and sponsors. Anaya was awake and happy the whole time. I think I was radiating joy. As I walked people would look at me and smile. Maybe it's because I was smiling...

I got this shot of Anaya helping me put up posters. Isn't she sweet. The Poster is bigger than she is.

I got to see an old friend today. We went to school together and learned about the environment together. I also got news that although my grandmother fell down the stairs and broke her arm she's going to be alright.

It wasn't until I got home and sat down to blog that I found out that Jack Layton had died. For a moment I was sad. Then I felt a sense of happiness.

I thought to myself "Good on You Jack. You lived your life on purpose. You created your dream. You did it! You've completed your life's work. "

I hope that one day someone will look at my passing with happiness and say the same thing.

I'm sorry that I haven't gotten to answering my email in the past few days. I'm trying - I really am. I've been exhausted and today really needed to be all about Anaya. If you are waiting for a reply from me please send another message if it's really important. Your old one might be buried in the chaos.

Lots of LOVE!

What would I say?

2011-08-22T13:11:00.000-07:00

Recently a woman posted a link to a beautiful story on the Anaya Initiative Facebook Page. The story was about how a mother with a disabled daughter wished she could tell a new mom with a disabled baby all of the things that she now knew from experience. It is beautifully written and very true. I want to share it with you so here it is:

What I would tell you...

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Now online at www.WhatIWouldTellYou.com

I'm really sorry but Anaya just woke up and is having difficulty. I will have to finish this post later. - Love Camara

Ugh

2011-08-21T19:30:00.001-07:00

I will write as soon as I recover from the exhaustion and stress I'm feeling. I'm burnt out and overwhelmed.

Solara's father, Kristian, is here for the week. He arrived today. I'm so thankful.

The good news is that Anaya is doing great today.

If you live in Nelson and you have time to help me friday for Anaya's birthday please email me. maraglow at gmail.com

So far I have 3 helpers for an event that expects like 500 people and I'm freaking out with stress.

Need help with
Cooking ground beef (for burritos -30lbs to be cooked day-of.)
BBQ hot dogs
Cutting veggies
Warming beans / burritos
Keeping food area clean

Kids games helpers

Setting up auction items
Manning donation boxes and stamping people for party
Live Auction spotters
Online auction update person

Please. We need people.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Apple Cider Vinegar Baby

2011-08-20T09:12:00.000-07:00

The night was short and beautiful. I slept well for the first time in ages. Anaya slept through the night, although I woke a few times to check on her. She was very congested in her nose. This morning I started doing research about sinus infections and found out that most of them are caused by mold or fungus. You can inhale mold/fungus spores and they can get into your sinuses and breed there.

I found a site that talked about drinking apple cider vinegar daily. This reduces phlem and also provides a more inhospitable body environment for the nasty fungus. (Those of you with recurrent yeast infections take note!) It also talked about oregano oil, citric acid and vitamin C. So I mixed up all of us a morning drink.

(per drink)
2 tablespoons Apple cider Vinegar
1 cup hot water
1 big spoon honey
1 tsp lemon juice
1000 mg Vitamin C
5 drops oregano oil or spirits.

Drink as hot as you can stand it. Trying to inhale the vapour as you drink it. It should provide a bit of relief almost immediately, reducing congestion.

Then I rinsed out her nasal passage with buffered saline mixed with a splash of hydrogen peroxide.
Then I gently sucked out her nose with the suction machine (because she cannot blow her nose)

After all that her nose is COMPLETELY clear now. She is a bit more wet and dealing with secretions but at least she can breathe through her nose!!

If anyone in Nelson can volunteer some time I need some help over the next 6 days with the party and the house. Please feel free to facebook me. http://facebook.com/camaracassin

Need: Someone to put up posters!
Need: Tent for shelter for Bands
Need: Volunteers to BBQ and set up auction
Need: Someone to pick up tables from the Hume and take to park.
Need: Personal assistant for the day to help me with Anaya. Someone who is willing to learn how to suction.

Birthday party and then some respite!

2011-08-18T13:53:00.000-07:00

Many of you know that Anaya is turning two next week! This is an incredible and miraculous event. Baby Anaya's Birthday Bash is happening on Friday the 26th here in Nelson BC at Lakeside park. The whole city is invited.

It's a big deal. We were told not to expect her to live that long. She has outlived the average age of death of a Krabbe baby by almost a year. For the last three weeks she has been battling pneumonia and today I can say with confidence that I believe she has overcome it!! She still has a bit of a runny nose but is getting stronger every day. Her lungs are stronger, her breath is coming easier. She hasn't had any prolonged apnea episodes. She is struggling still with increased seizure activity. Her little arms and legs twitch and she's having muscle spasms. She needs to go to see the Palliative Care team and the metabolic specialists for help with these developments.

After the big event next Friday we are going to take her down to Canuck Place Hospice in Vancouver for some respite *not end of life care** and to get the medical help she requires. No longer having nursing in our home has been an interesting and draining experience at the same time. In order to facilitate our whole family being able to be with Anaya near the hospice, my grandparents have arranged to let us use their motor home for an extended period. The temperate climate of the coast will be easier on Anaya. Travelling with her in a vehicle is so difficult. She has so many items and machines that she has need of on a moment to moment basis. Having the motor home for a transfer vehicle and as a place to stay while we are down there is essential. My uncle brought it to our house the day before yesterday and dropped it off. I'm quite excited about it. It's an old 1987 Ford Vanguard. The interior is so 80's that it can't help but make me smile. Pink Carpet, floral wallpaper, baby blue seating. The main part is that it runs and everything works. It has a generator to provide electricity for the oxygen and suction machines. We don't know how long we will need to be there for, and so we are bringing "Home" with us!

I am so incredibly grateful to Albert and Vivian Medland for their motor home! We love you grandpa and grandma!

With the help of Anaya's supporters and The Anaya Initiative, we hope to stop in and talk to a few groups about Newborn screening for treatable diseases like Krabbe and also speak to children in schools about Children with disabilities. I had a dream that I was going from school to school with Anaya and speaking to assemblies about how people with disabilities have their own purpose too! That it is OK to stop and talk and communicate with the disabled and to be inclusive of them.

I feel as though this dream was a message from God and the Universe telling me what path we are meant to take from this point forward. As Anaya continues to get better I am going to start working on finding people / groups / schools who would be interested in having us speak. We want to raise awareness about this disease so that one day every baby born with Krabbe will get the opportunity for a longer, higher quality life!

I want all of you to know how much your help is appreciated. We now have 85 subscribers to the blog raising $842. a month for us to take care of Anaya. All other donations are going into Anaya's account for her care and medical needs. I will continue to write as often as possible about Anaya, giving the best I can to you, our readers. You are our Angels. I am also planning on writing a half truth/part fiction story with Anaya as a central character. You'll be the first to read the first chapter :)

Getting Better!

2011-08-17T17:44:00.001-07:00

Just a quick note to let you know Anaya is doing really well and we firmly believe she is pulling through!

I have a big post to write. So many things to tell you!

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Vedic Energy Session

2011-08-17T14:35:00.000-07:00

Breakdown

2011-08-15T20:03:00.000-07:00

Anaya almost died yesterday. We were at home. My friend Danielle, who is a nurse, was visiting and helping out. I went upstairs and had a nap, taking advantage of her watching Anaya for a while. I came down around four in the afternoon. Danielle was leaving so I thought I would pick Anaya up and change her diaper and hold her for a snuggle. As soon as I changed her position she started choking. It was a terrifying experience for her, and for all of us. This was the worst it's ever been. The closest she's ever come to leaving us.

She couldn't get a breath. Her eyes snapped open. They were huge, wide and panicked. I've never seen her eyes so wide open since she could see. It was like she was staring right at me, begging me to do something. Her mouth opened in desperate scream...but no sound, no breath came out, no breath went in. Her lips went blue, her face went blue, her hands and feet went blue. Her eyes darted back and forth desperately.

I fought down panic and put her facedown over my knee and rapped on her back, trying to dislodge the obstruction from her airway. After a few seconds I flipped her back over to look at her face, and to suction anything out of her mouth. Danielle ran across the room to turn up the oxygen, unable to find the source (which is upstairs). Solara jumped up from the couch and danced around the room in panic saying "Do something! Do something! She can't breathe!"

I shouted "Danielle! Help me! We need more oxygen! I can't get her to breathe! What do I do?"

She took the few steps across the room at a run and we had a blue baby pass off that most football players would envy. It was so fast I don't even remember it. She held Anaya in a drainage position and worked some kind of magic. My little love took a breath! Immediately I took her back from Danielle to calm her and soothe her. Her eyes were wild. Her breathing became rapid and the color began to return to her face.

At that moment Brent walked in the door. "Turn up the oxygen!" I yelled. He immediately sensed the urgency of the situation and ran up the stairs, taking three at a time. Right away the flow of oxygen in the nasal prongs increased and her face flooded with color. Her perfect little lips turned red, and her panic began to recede.

I held her and kissed her and loved her. Solara hugged her. Brent kissed her. We all were together. Danielle stood at my side and waited for the moment to pass.

It was so fucking intense. I was elated that she was still alive. We all were. So was she.

I always thought that when Anaya died it would be peaceful. That she would just stop breathing in her sleep and drift away. I never envisioned a traumatic death of asphixation before my eyes.

Then at bedtime she was seizing so badly she needed Ativan.

So that was what happened yesterday.

Today I was an emotional mess. I cried when I woke up. I cried when showing the house to some people (I need to move somewhere cheaper), I cried when my pharmacist asked how I was doing. I cried when the bank teller asked how my day was. I cried looking at the wall of vitamins - wondering if any of them would help Anaya come out of this pneumonia. I cried just thinking about her face. Her wide eyes, her fear.

Today was the first time I've left the house in five days. It was surreal. Like a completely different world. Solara and I ran errands together. Brent stayed at my house with Anaya. We got home as quickly as we could...and then Solara and I played "Wild Leaf Restaurant" up in her room. She made me an imaginary meal. It was good to be alone with her.

Anaya slept almost all day today - a side effect of the Ativan. Hopefully she is healing inside and getting good rest. We continue to love her and cherish her.

Schnitzle Saturday

2011-08-13T22:21:00.000-07:00

Monica stopped by Friday to soothe Anaya's neck.

The morning dawned early. Anaya was choking and sputtering. The entire night she had been so thick and gurgley. She was so wet yesterday that just before bed I gave her a drop of atropine to dry up her secretions. It was a huge mistake. I thought I was doing a good thing, because she was having such a hard time, choking on the excess saliva. But it reacted badly and all the junk in her lungs got even more stuck. Her breath was so bubbley, her chest rattled and she struggled to cough, but couldn't. It was a nightmare. I was up with her for hours, suctioning deep into her throat to get the thick white and yellow mucous.

Six am came. I gathered Anaya in my arms and carried her, and the suction machine downstairs.

Her papa was sleeping on the couch. "Brent, can you take care of Anaya so that I can sleep for a few hours?"

"Mmmhmmm..." He said. He stood and stretched. I helped to set Anaya up on the tilted surface of the wedge, head down. I was hoping the mucous would drain from her airway and out of her mouth. Brent sat next to her on the floor. I went upstairs to bed. My head throbbed and my neck was so tight and ucomfortable that I had trouble finding a comfortable position on the pillow. Eventually I fell fast asleep. I awoke around nine thirty, opening my eyes to a bright and sunny day. Immediately I thought of Anaya downstairs. I jumped up, put in my contact lenses and flew downstairs to see how she was.

"Is she okay?" I asked. Brent looked up. His blue eyes were tired and concerned. I knelt down and put my hand on her chest. I felt her lungs expanding and contracting. I looked at her color, I kissed her cheek. Brent placed his hand on my shoulder. I looked up at him.

"Good morning" He said, smiling.
"Good morning" I smiled back. Anaya seemed much better. The mucous had started to drain, she was much less thick. Her breathing was much easier. She slept. Admittedly she was upside-down, but she was sound asleep. I sat down on the couch and opened my computer. I checked the Anaya Initiative Facebook page and my e-mail. At that point a nurse named Meghan arrived. and we talked about her possibly working with Anaya.

She was young, tan and cheerful. She knelt down beside Anaya and touched her. We spoke about Anaya's key care needs, and how we like to give Anaya the best life experience possible. I explained that although she has severe pneumonia right now, I have faith that she is going to overcome it. Meghan liked the idea of working with Anaya and told me she is available three days a week. I told her that nothing was certain yet, as we are still working on getting government funding for independant nursing. We agreed that we would submit her resume to Anaya's lawyer and work on getting something set up. If it is at all possible I know that Jennifer Williams can do it.

Meghan left. I lay Anaya on the couch beside me. Setting my computer in my lap I began searching for techniques that could be used to help bring the phlem out of Anaya's lungs. Brent brought me coffee from the kitchen. Oh, coffee. Nothing like Nelson Freshly roasted OSO Negro coffee. If you've never had it let me know and I can help you get some. Oh sweet heavens. Dark. Deep. Delicious. Smokey. mmmmmmmmhhmmmmm. If I have to leave Nelson I usually try to remember to bring some with me so that I'm not stuck with weak, tasteless stuff that other people call coffee. If you like Starbucks coffee you'd like OSO better.

I gave Anaya some percussion on her back and chest and suctioned the yuckies out of her mouth. I admired the pink and blond braid I plaited into Anaya's hair. I posted it on facebook for everyone to see. It made me smile. I got a text from my friend Amelia, she asked if she could do anything to help today. I messaged back "Do you know any amazing massage people? Anaya's neck and shoulders are spasming and seem very painful." She messaged back that her friend Jill would be calling me. It wasn't long before Jill showed up at the door.

Jill was a kindred healing spirit. Her presence was calming and beautiful. She massaged Anaya and I took this picture. My little love sighed and bubbled. She was so wet, but at least it was coming out. I placed a diaper under her face to catch the dribbles. A receiving blanket is not enough anymore to soak up the drool. During the massage some really thick mucous came out. Thank God. I'm so glad that the guck is breaking up in her lungs. To me it means she is getting better. I checked her temperature with my lips. Kissing her head I noticed that her body temperature was perfect. Not too hot. Not too cold. Jill finished and was about to leave when she asked how I was. I told her how my head had been aching for days, my neck hurt and I have been so stressed out, tired and emotional. She pulled up a chair and told me to rest my head against Anaya's changetable. I leaned forward and held Anaya's hand. Jill massaged my shoulders and my neck. It was amazing. I'm so glad that she is coming back again tomorrow. Anaya and I both benefited so much from it.

Later in the afternoon Brent and I took Anaya upstairs for a bath. It was short because she couldn't lay on her back for long without choking. We got her all cleaned up though, and then took her downstairs. I wrapped her in her mama taco towel and gave her the special teether. I call it her Gnaw-Gnaw because she bites on it so hard. She just loves the thing. I brought her hand to the handle and she grasped it. Moving it to her mouth, she bit down on it and held it there. She was so cute, with her bambo doll, her taco towel, her braid and her Gnaw-Gnaw. The saliva continued to pool from her mouth but she lay on her side. She was wide awake, aware and beautiful. It was at that moment that I knew she was at peace. Living, dying, who knows...but at that moment she was happy.

I did some work on my computer, staying near her to suction her and soothe her. Brent ran out to get groceries and go to the drug store for me. Solara played in her room with her Lego. She's a lego fiend.

I wrote out an email to all of Anaya's angels that have ever helped us out. I asked for financial support. I asked everyone to help out just a little bit so that I can stay with my baby. I swallowed my pride and sent it. Shortly after that Solara came downstairs and said "What am I going to do?" I suggested she help me make dinner, seems as how Anaya was doing alright. We put Anaya in the wagon and wheeled her into the kitchen. I taught Solara how to make pork schnitzle.

Here is the Wild Leaf Recipe for Pork Schnitzle for 3:

6 thin small boneless porkchops
3 tablespoons dijon mustard
2 eggs
1tsp garlic salt
1tbsp Keg steak spice
1/2 tsp pepper
2 cups bread crumbs
1/4 cup frying oil

Mix the mustard, eggs, and spices in a shallow dish. Hammer the pork chop with a meat mallet until you get all your stress out and the chop is paper thin. Dip meat in mustard sauce, then lay the meat on the breadcrumbs, patting it lightly. Flip it over to coat the other side. Do all chops.
Heat the oil on medium heat in a frying pan until it reaches a sizzle when you place a drop of water in it. Fry each schnitzle for about 3 minutes a side. Place cooked schnitzle in 200 degree oven while frying the rest of them.

And that's It! Delicious! Solara did a magnificent job. We also ate veggies and leftover rice with it, but Sola's Schnitzle was the hit.

Anaya is sleeping soundly in her wagon still. I should check on her again now and change her diaper. After that it will be time to give her the steroid nebulizer full of muco-mist, ventolin and pulmocourt and give her some more chest physio (upside down chest thumping with a strategy)

Here's to a beautiful and miraculous day. Anaya seems to be winning. Please pray for her, or just give her a mental hug full of love. Thank you.

P.S - I'm sorry for making everyone cry yesterday. I'll try to write some more positive posts.