Tuesday, December 27, 2011

Yup. A dog and a slide.

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.

Monday, December 26, 2011

Moss and Moonbeams

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.

Friday, December 23, 2011

Krabbe Disease / Krabbe Leukodystrophy Treatment

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.

Thursday, December 22, 2011

A cure on the horizon...

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


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).

Wednesday, December 21, 2011

Wow. Is it Christmas yet?

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,

Sunday, December 18, 2011

Stone of Courage and Love of Life

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.  

Thursday, December 15, 2011

Daddy's Story

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.

Saturday, December 10, 2011

Moving Forward

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 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.

Tuesday, December 6, 2011

Shoes of the Soul

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.


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.

Thursday, December 1, 2011

Grief and longing

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 :)