Monday, May 30, 2011


Yesterday was our first day spent back in Nelson. It is lovely to be home. The pace of Nelson is like a breath of fresh air - or maybe that IS the fresh air! It was a bit overwhelming at first. The house and the yard were in need of some serious work. I swallowed my pride and put it out there and asked for help. I was fortunate that Amelia, Anna, Steve and Mike all had time on their hands and love in their hearts to lend a hand.

Now the house is clean, the yard is weedwacked and mowed and Anaya and I's bedroom has been re-organized so that it suits us perfectly.

My two close friends from Vancouver, Stuart and John, have come to visit for a while and help me with Anaya until our nursing support kicks in again. They've been an amazing help and comfort. John's been making sure I eat (entirely too much), and encouraging me to take moments for myself while he watches Anaya. I even had a bath. (This is a luxury sometimes!)

Brent is coming over to visit with Anaya for a while today, I think she will enjoy the time with him. I'm going to take Stu and Jon on a tour of our beautiful little town and show them how lovely Kootenay lake is. We walked down by the waterfront last night and I took this picture.

The Koots are home. This picture is dedicated to my friend Cameron.

Wednesday, May 25, 2011

Always Broken

I find the post that Natalie wrote to be profound. Perhaps I am "Never Not Broken", perhaps I harness my fear and ride it. Perhaps that's why I sometimes scare people with my intensity and my inability to see obstacles that cannot be overcome.

I find most obstacles overcome able. I am like water. I flow. Sometimes I fall, sometimes I go slowly, sometimes swiftly, but I trust that I will get to the ocean eventually. I trust and have faith that I will always make it around the bend, and over the next set of falls.

Maybe one day I'll have someone to share my journey with that is on the same page as me, or maybe not. It must be intense to be around someone like me who is "never not broken".

My baby girl lays beside me, and I listen to her breathing. Her life has changed me in ways so profound I can hardly explain with words. My little teacher. She has taught me more than anything to live in the moment, love with all your heart, give everything you have, and hold nothing back, even if it breaks you repeatedly. I am still whole in my brokenness.

The fundraiser held over the past 48 hours has generated some money. It is enough for me to stay with my baby, enough to buy her carseat and supplies, it has bought us stress free time together to LIVE and LOVE. I thank everyone for that with all my heart and soul. Our moments are precious. Not just mine and Anaya's but each and every one of YOURS too. Be sure to make certain the people you love in your life know it. Take a moment to truly connect with their soul, bask in the profoundness that is the joy of human love and connection. It doesn't get any better than that folks. It just plain doesn't.

(Even the hater that's been sending me nasty email all day!- You must really have a lot of hurt inside you that makes you say such ignorant things)

There's always room for more love - and if there isn't room, it's your own issue to deal with.

Goodnight Yall!
P.S- Texas, I'm so gonna whoop ya for missing this one. Where the heck are you?

Sunday, May 22, 2011

A post from Natalie deGoey

Never Not Broken

So, I had a pretty intense experience this morning, and I wanted to share it with all of you, as you have been so immensely supportive of Camara and Anaya over the last little while, and I found it to be extremely powerful and timely!

Jennifer Williams was kind enough to come over this morning to hang out while I went to a yoga class... I have a very regular practice that is central to my life and a big way that I manage stress and anxiety, and I have been feeling the loss of it the last couple of weeks, with wanting to give all my energy to Camara and Anaya... I realized the other day that if I am running myself ragged, I am not going to be able to keep giving them everything they need and deserve, and I think balance is important in all aspects of life, but possibly more so in the most trying of times!! I have grown up watching my mother be an entirely selfless caregiver, and it isn't the right way to go through life - "me" matters too, and helps you be more effective and helpful to others! Anyways... I decided I needed to re-focus and get centred, so I could come back raring to go, so I went to a Hatha class with one of my favorite instructors (Julie Peters, of East Vancouver Yoga Studio and Yyoga), knowing that I might be a bit of a wreck, but that it could only do me good.

No sooner do I sit down on my mat, than she starts speaking in her wonderfully soothing voice (she does poetry slam too, people... she is amazing), about this "new goddess" that she recently learned about. I don't think the goddess is new (haha), but it was new to her, and certainly to me... I will try to sum it up as best I can, and there is a link to a lecture at the bottom of this email that goes into more detail.

So this goddess is called Akhilandeshwari, which loosely translates as "Never Not Broken"... when you break down those words, they really mean "Always Broken".... at first this sounds very sad... but Julie went on to explain that what this goddess has to teach us is that "to be broken is its own kind of wholeness"... rather than be contained by a "limiting completeness", she is able to use her constant state of breaking apart to continuously reinvent herself, and wrap herself into whatever shape is required to survive or thrive under any circumstances. This idea kind of spoke to me of my dear friend... my soul sister Camara... but it gets better....

The instructor goes on... "so Akhilandeshwari has this RIDE...", and we all giggle a bit... "and her ride is a Crocodile", we giggle some more... but we aren't laughing for long... or at least I'm not, because the next thing she says starts the tears just streaming down my face....
"and the crocodile represents our reptile brain... the center of our fear." The great thing about this goddess, is that instead of giving in to fear, or instead of pretending that fear doesn't exist - of "conquering it", and sending it away from her (which we all know you can't REALLY do, even if you think you have for a little while)... she freaking RIDES on it... she harnesses it, and she uses it, and it becomes part of her power. It flows with her and is a part of her, and it makes her strong.

By this point I'm trying to choke back audible sobs, and I'm feeling like this story is just speaking directly to my soul, as if a window has somehow opened up into my life, and this voice is speaking directly into the depths of what I need to hear in order to keep going. I mean, as if this goddess doesn't speak to who Camara is, and the way that she has turned this devastating situation into a chance to make a positive impact on the world. She takes that fear that she feels about losing her baby and turns into something vengeful and powerful and AWESOME (and I'm using the real meaning of that word here, not the surf-lingo version)... well, she does... and she has, and she IS. No matter what struggles she has gone through in her life (and there have been a few, not the least of which is mothering a very sick child), she always seems to take it under her skin, and use it not as a crutch, but as a way of moving forward into the world with more strength and compassion than any one woman should be capable of... all of these shattering experiences have been part of her path, and made her into the incredible person she now is... and that so many people are touched by, and moved to offer help and support to.

For me, Baby Anaya is the catalyst, and you can't help but love her in all her softness and sweet beauty... but Mama Camara is the power and the fury, and the righteous anger that creates real change in the world. She could so easily have kept her struggles and her fears to herself, and gone along in isolation, grieving for her child, but instead she is fighting.... fighting SO HARD every day to give Anaya and Solara the best POSSIBLE life... a life which includes almost constant hope and determination... and the ability to laugh through tears (or to laugh so hard it BRINGS you to tears)... and she is sharing it with all of us, every day... sharing her struggles... her heartache and her joy... and most commendably, she is asking for HELP! She has reminded us all that we are not alone, and that there ARE people in the world that will do anything to help a friend, neighbor, or total stranger! She has renewed our faith in humanity, and our sense of right and wrong...

I could go on for days, but I just felt the need to share with you the realization that I had about the person that Camara is (I always knew it, but this goddess finally brought it all together for me), and thank everyone who has contributed time, money, thoughts, prayers, energy, food, cars, milk, etc and especially love. It helps so much more than you could ever realize, and as time goes on she is going to continue to need your support, but I know she is also going to continue to surprise us all with her strength, and her ability to be "Never Not Broken", and show us all what it means to be a warrior!!

Here is the link to the seminar about the Shaktipat goddesses, if you're interested in a more 'expert' take on Akhilandeshwari and her crocodile ride...

A Message from Anaya's Fan Adriana Araujo Curvo
I've just woke up and run here (to Facebook - The Anaya Initative), because I think of this family often. And I had this message in my dream: we all want to help Anaya's family... and no doubt Camara needs to get some care time to herself, like the massage someone set-up for today, and I believe if Camara gets at least 2-3 massages a week it will make wonders to her body and make her refreshed and renewed to have more energy and calmness to give it to her Baby Girl that WE ALL ADORE. I believe we all mommys know how hard it is to deal with a sick child when he/she gets a cold or a fussy tummy and it drains all our energy and I can only imagine, how much Anaya needs her mommy feeling 100% to give her baby girl a 100% of her.

I know we all want to help and money wise many of us probably struggle with only 1 income coming in... but if everyone could give $10 I dont think it will hurt our pockets, but many $10 together will turn into a decent amount that Camara could use to pay for her expenses while here in Vancouver.

But to make it work. We could set up ONE DAY, Tomorrow May 23, for this donation to be made in this matter. And at the end of the day, we'll see how many have helped and take this weight off Camara shoulders. Any thoughts?

To donate please click the paypal button on the side of the blog or click HERE

Time for change

Hello friends,
Anaya and I both slept very well. We are comfortable and have been gently welcomed into Natalie and Geoff's home. Natalie is doing a great job of taking care of us, and organizing people to help me and Anaya. Thank you Natalie - and Thank you to everyone who has helped, or has offered to help in any way.

Today we are hoping to go on an outing to find Solara a birthday present as it is her 9th birthday on May 31. I have a couple of ideas and we'll see how it pans out.

Today I'm also writing with a purpose because I want to fill you in on a major shift that is taking place in our lives.

You may have noticed that I seldom write about Anaya's father, Brent. I also do not write about our relationship, and it's struggles, because I attempt to do my best to focus on the positive. I attempt to use this blog to really express how I'm feeling about Anaya, and to let people know how Anaya is doing.

Brent and I have decided to go our separate ways after a couple years of attempting to reconcile our differences. This happened the day that I brought Anaya down to the hospital to attempt to get some respite and help - as I was throughly exhausted and emotionally drained. We are amiable in our separation, and plan on parenting Anaya together. He is currently moving to his own space. Solara, Anaya and I will live alone in our little rainbow house. Me and my girls :) Brent will be coming to visit and help care for Anaya as his work schedule allows, as often as he wants.

The timing for this separation is intense, however it had to happen and I am glad for it. I do not feel incredible sadness or loss. I feel friendship and love for Brent and I pray that will remain in my life. I have some fear of managing my two girls, my special little loves by myself. But I have confidence that this is for the highest good of all parties and that I CAN DO IT! We will need the support of our friends and family to establish a place of love, safety and security within our home. Help with tasks, etc.

At the moment I can feel a support network of love holding us up, and a security and confidence within myself that says I cannot fail.

With love to you all,

Friday, May 20, 2011

Transfer Day of Chaos

How can I describe to you the feeling of floating in a sea of uncertainty? For the past 10 days I haven't known what our future plan is, when we will go home, whether or not we will be transferred to SunnyHill Children's or Canuck place. Whether or not Anaya will live or die. It has been intense, and yet there was no day as intense as today. Let's call it "Transfer Day".

Basically Anaya is stable now. The new medicine, Keppra, has quieted her seizures and something has calmed her apneac spells. She's breathing now as she did before - still laboured, still wet or dry depending on the day - but normal for her. We had what felt like tens of professionals in and out of our hospital room all trying to make a plan for Anaya, and yet there were several moments of uncertainty and miscommunication. One person said we were going to Canuck place, another said we were going to SunnyHill, another said we were staying in hospital. I was just wide-eyed and overwhelmed. I felt like saying "Excuse me- Hi everyone, I'm just gonna pack up and go home now ok?" I actually did say that at one point and was convinced that the right plan was to go to SunnyHill and have a proper seating assessment done - even though it meant staying there over the long weekend. The Dr. preferred to see Anaya leave the hospital while she was stable in order to keep her healthy. There are several nasty viruses going around.

So we packed up everything and Anaya and waited for what seemed like hours for the Pro's to tell us what to do and where to go. Then we headed for SunnyHill. Sounds nice right?

I left Anaya in the Van with Brent and walked into make our arrangements and find our room. I was welcomed warmly and gently by some very nice women and taken to Anaya's spot in a dormitory for disabled children. There were three beds, 1 padded jail cell of a crib, and a hospital type crib for Anaya. There was a chair next to Anaya's cell for me to sleep in. I didn't even see a spot for me to put my luggage or her clothes really. That's when the panic attack hit. My vision narrowed to a hazy tunnel and the woman showing me the room was saying something...something...I couldn't make out her words. I shook my head. "NO!" I said and spun on my heel and left the room.

"What do you mean?" The doctor asked.
"We can't stay here" I said.
"Why" The doctor asked.
"I just can't! The hospital said your rooms were like theirs. I was told Anaya and I were going to have a room to share because I have to stay with her 24 hours a day because you guys don't have 1 to 1 nursing support. I can't sit with her in there for a week. I just can't.

My heart was pounding, my chest was tight. I was solid and firm in my stance. I'm certain that some kind of panicked fire was blazing from my eyes and I told the doctor.

"I think we'll just go home now." I went outside to the Van. Brent was unloading Anaya's stuff. "You can put all that away," I said "we can't stay here." He looked at me with a quizzical expression, said nothing and started putting the stuff back in the van.

Grant arrived from Calgary to take Solara for the weekend at that moment and he said "What's the plan?" I almost cracked up. Everyone was looking at me. Brent from the rear of the van, Solara from around my waist, Grant from the right.
"What's the plan?" I repeated...and tried to make my mind think.

I called our hospital unit and spoke with our head doctor. Dr. Jen. She's awesome by the way. I explained that I was uncomfortable with the way the accommodations were set up, discomforted by the feeling of warehoused disabled children. I told her I had decided to go home. Gently she convinced me that Anaya's seating assessment at SunnyHill was too important to miss. I agreed but stated that I couldn't stay there. Nor could I leave Anaya there. Ever. The very thought makes me have terrible pain in my chest and a desire to scream. I'm in no way knocking SunnyHill. Every place has it's purpose. I just have a fear of confined spaces and maybe I'm just too used to having my own space with my precious little love. I'm used to sleeping - at least a little bit. I'm used to brightly lit rooms with flowers and music.

We came to an agreement. I would check in at SunnyHill and then take Anaya "Out on a Pass" for the weekend and come back for her to be assessed on tuesday.

I called my close friend Natalie Degoey from the hallway.
"Nat? Me and Anaya are coming to stay at your house for the weekend. Just me and her and the dog. I'm sorry for assuming this but we can, right?"
"Of course you can, Mara." Natalie said.
"I'd be offended if you didn't assume you could stay at my house!"

So we packed up Anaya again and headed to Burnaby. I was in hyper anxiety overdrive. If I were a chimney I'd be puffin up a storm! My emotions were numb, my mind was empty yet agitated, my driving was erratic. We arrived at Natalie and Geoff's house in one piece. Geoff started making food and I tried my best to organize all of our stuff that we unloaded from the van. I separated it into stuff that Brent can take back to Nelson and things that I need to stay here with Anaya for up to two weeks.

That being done I ate. Brent sat with the baby for a bit and then went out to meet a friend. I slowed down by checking my facebook page and answering urgent emails. I've had so little time for that lately.

I told Natalie that I wanted to write a blog post and asked her to hold Anaya. She happily and cheerfully held her, suctioning her every few minutes as she is very wet. Natalie actually had fun with Anaya and the Suction Machine. She would put it in her mouth and Anaya would bite down on it and close her lips, and Natalie would laugh her bubbley heart out. I smiled and kept writing. I stopped to take a picture for you to see.

Tomorrow I need to find a vehicle to get Anaya to her appointments and to get around. I will also need some volunteers for the next week or so who want to give Anaya and I a hand - I can't drive alone with her legally - - or morally. Someone either has to drive or sit in the back with Anaya to ensure she's ok and doesn't need to be suctioned and isn't turning blue. I would also like to hang out with friends that love me and would like to spend time with Anaya and I. We have time. I'm going to also be doing computer work and web design for a few hours each day because I have not been able to focus well on my work and the bills still need to be paid. Thank God for the help that Anaya's supporters have been giving her towards our needs and her needs!

If anyone would like to provide any additional help or support to Anaya and I while we are alone here in Vancouver (Burnaby), please e-mail Natalie deGoey at and she will help to organize, as I have NO NURSING SUPPORT AT ALL and will be 24 hours 1 on 1 with my little love.

I should tell you that Anaya did not seem to take much notice of the commotion going on around her. She had a decent day, although she struggled a bit with wet secretions. I hesitate to dry her out too much though - because a bit wet is better than a bit dry. She is content. She had alert moments and certainly enjoyed playing the suction game with Natalie. She has some pain but we've been giving her painkillers to help make her life more comfortable. I can't stand to see her in distress.

I'm certain that there is still so much more to say but I've been writing for well over an hour now and I think I'm tired. LOL.

Love to you all. Thank you for keeping us in your thoughts and prayers. Thank you to Katie and to Seana and to Natures Path and to Natalie and Geoff, to the Dr's and nurses, and cleaning staff, and the friendly maintenance guy, thank you to the lady that made my coffee and the woman who asked to pet the dog. <3 - Camara

Thursday, May 19, 2011

Hospital Day 9 (i think)

Time moves in waves here. There are moments of absolute chaos and moments of quiet hissing stillness. Anaya almost died this week. It was intense. By some miracle she has recovered and has stabilized. I am SO glad :) I love having my little teacher around and I will take care of her as long as she wants to stay.

I'm not going to spend forever filling you in on all the bureaucratic BS that is my day to day existence here as everyone tries to figure out what to "Do" with us. But I will fill you in on the highlights. It's gonna be point form because I'm exhausted.

1. The nurses, doctors, OT's, PT's and Palliative Team from Canuck place are all women except for 2 men. That is quite the ratio on this unit! Seriously though. The room will be filled with 10 women and 1 man. Shows how far women have come in medicine.

2. Every single one of them has been kind and wonderful to work with. They all struggle with the red tape as much as anyone else does.

3. I have gotten to see lots of my old high school friends here in Vancouver as they have come to meet my beautiful baby, and reconnect and it's been lovely.

4. I've made some new friends that I find so much love and comfort in their presence. They include Lisa Fedorak, Cameron Stewart, John the Bear,Carey Stacey, Karla, Dr. Jen, Soon to be Dr. Stephanie and Melanie Skolovy-Brodi
YOU ALL ROCK MY WORLD and I am so glad to have you in it.

5. I met another "Camara" she works at Canuck place. ha!

6. You can buy roses made of feathers. Who knew right?

7. Hospitals are NOT the place for healthy 9 year olds. Solara is bound and determined to help me through this difficult time be distracting me with her dramatic antics(ARRGGGHH!!!)I'm about ready to sell tickets to her show. LOL

Well, Here's to Anaya! I'm hittin the hay with my little love cuddled close to my heart.

Saturday, May 14, 2011

Hospital Day 5

My sweet baby girl is having a rough time.
It seems like we are getting closer to the day she'll get her wings and fly to heaven.It was a long drive down here. I had to come alone, suctioning her every five minutes - while driving and reading a map. I decided to bring Anaya here because there was a lot of family stress in our house, and I was also exhausted from doing most of the nursing of the previous 10 days by myself. Anaya had been having tons of Apnea or "Apneic events" that had me really concerned as she appears to be uncomfortable and in pain. She needs special care and I'm at the end of my rope.

I wanted to get a respite stay at Canuck Place. It's a lovely hospice for palliative kids in Vancouver, but it's hard to get into. So I came to the Children's hospital for them to Assess Anaya and hopefully get some respite.

Initially it was very difficult here. I told the nurses and Dr's that Anaya cannot be left alone because she sometimes stops breathing or needs frequent suctioning so that she doesn't choke - but they just thought I was being an overprotective mother. So I had hardly any nursing support- i had to beg for them to watch her so that i could go get food or take a shower.

Then they did an oxygen and breathing study on her called an oxymetry. She stopped breathing 373 times in a 12 hour period, long enough for her oxygen levels to go way down, and her heart rate would drop too. Now Anaya has 1 to 1 nursing care (her own nurse). So that I dont have to be nursing her 24 hours a day.

The Dr's are very concerned about her breathing. They suggested we do a study on a steady dose of O2 to see how it would help her. It was a good improvement. She only stopped breathing 33 times and her oxygen levels did not get too low. We discussed the Bi-pap option and it was explained throughly to me how it would actually worsen Anaya's condition. Because she has excessive secretions, the bi-pap would allow more fluid to build up in her lungs, causing lung trauma and pneumonia. It could actually make her life shorter and more uncomfortable. Now that is an explanation that I can understand.

We also talked about pain management. The Palliative team suggested some strong narcotics to help Anaya through her painful spasms. Then I had another Dr. come in and tell me to be prepared for Anaya to stop breathing and die if we used those was I ever upset. It turns out that it was a mis-communication and that the drugs are safe, they will not kill her inadvertently.

We have had lots of amazing visitors. Friend of mine from high school have been very supportive. Some of Anaya's special milky mama's from the lower mainland have also visited and brought milk, food and love! I'm so very grateful for all of the support. It's difficult to be here but I know that I am doing what is right for Anaya. To get her the help and support she needs.

I don't really know how we are going to get home when we get discharged (whenever that may be) van is in rough shape. I can't trust it to make it around the block - let alone 400km. If anyone knows someone who might be able to help with the transmission in a chevy venture van 2004 or of ANY other options please let me know as soon as you can. I'm available on my cell phone at 250 -509 -0593 or you can email me at maraglow @ and I will respond as soon as I can.

Thank you and God Bless

Tuesday, May 10, 2011

BC Children's Hospital

We arrived here. The BC childrens/ womens hospital is a MAZE! I feel like a mouse that has to memorize the little twists and turns. It is not easy to find things here. Good thing they hand out maps at the front.

It's been a crazy long day that I want to fill you in on but I'm too tired.

Suffice it to say that Anaya is doing well. She is not having any health deterioration at the moment. We are here to get a full assessment and access resources for her that we cannot get in Nelson.

We are looking into Bi-pap apnea support and also pain relief/management and physiotherapy support - as well as how to get aids for her such as a wheelchair and special car seat.

I've been so busy taking care of her the last few days that I've let myself get run down. I really need some help and support. I could really use a break. I need sleep. I need a kid-free day. I really hope we can get into "Canuck Place". It's a hospice for palliative kids here in Vancouver. They provide care so that parents of special kids can have a break from having to manage so much all the time.

I'm so exhausted. It's 1 am here and Anaya's due for a feed. They don't have the nursing resources to let me have the night off...

Thank God for friends like Kyle, Cam and Katie for being my Hero's and filling my day with awesomeness (friendship, food, phone charger, laughter and LOVE!) You guys are the best.

Sunday, May 8, 2011

Mother's Day!!

What a beautiful day! I have had an incredibly blessed day. It started with waking up with my two favorite little girls! I came downstairs to a perennial daylily and a home-made pin from Solara. We thought about going out to the Procter Mother's day event at the Procter Community Hall - but Anaya was having a bit of a rough time with her secretions and I thought it might be a bit stressful to be taking care of her surrounded by a hundred people.

I miss Procter. It's such a good community. It's the people I miss the most. The only time I see them now is when I'm dashing around Save-On foods or Ellisons trying to gather up groceries.

I posted a tweet about how I wished I could buy some flowers today to plant in my yard and I got showered with LOVE! Monica wrote me and brought by a gift of money from a lady who said it was for me to spend on MYSELF! (So of course I went and got flowers!) Then I was sitting out in the sun holding Anaya, with Solara sitting on the stool beside me - when a family I don't know arrived with the MOST BEAUTIFUL hanging basket of purple petunias. It's HUGE. The lovely woman introduced herself as Kara (sp?), a reader of my blog. I was blown away by her thoughtfulness and generosity.

Thank you so much!

Anaya enjoyed her time out in the sun, and now we are back inside, just to make certain that she doesn't get too much at once. I love that the sun sets so much later now, that it shines all over my yard and is encouraging the most beautiful blooming rock wall I've ever seen. I feel so happy and blessed for all of the love in my life right now. It seems like these days smiles come readily to my lips and sparkle in my heart.

I just saw a hummingbird zip past me. Apparently it is a good omen. It is said in some cultures that the hummingbird symbolizes Timeless Joy and the Nectar of Life. It is the symbol for overcoming that which seems impossible. - Quite fitting I think.

Some things seem impossible - but they are not always so, just complex. Sometimes the answer is beyond our current understanding...

My little love has grown so much. She is a little girl now. I love running my fingers through her angel silk hair....I'm going to go and hold her now. She's a bit wet in the throat and she needs me.

Happy Mothers Day to all MOMS out there! You are what makes the world go round!

Monday, May 2, 2011

Rain and Rainbows

There are moments in life that stop time. Moments that surround you completely with their vivid arms of sensory interpretation. I have moments like that quite often. Sometimes it's when I'm with Anaya and Solara, sometimes it's when I'm alone, sometimes it's when you look into the eyes of someone you've just met and find part of your soul staring back at you. Or when a friend comes over and brings you food made with love. The moment can steal up on you. Usually you don't notice it, but if you are open with your heart, and let go with your mind - they come more frequently.

I haven't slowed down much lately. In fact - I find myself so overwhelmed with things that I "have" to do that I have been missing out on moments like that. I've taken on some big projects for my home-based business and also trying to keep up on Anaya's website etc. Having realized my work-aholic attitude last week, I've started to schedule my time as to be more effective and less overwhelmed. So far I'm still behind. I'm trying like anything to catch up but there's always more. I need to find someone who can help with emails and someone who can come to my house and help me clean so that I can spend more time holding my little love.

But it's hard to schedule time for Anaya. I just want to hold her and love her every second. How can I say "These three hours everyday will be just for Anaya". It just sounds wrong to me. I need a duplicate "me" to do the work so that I can just snuggle my baby. We all wish right? I wonder if I would argue with another me. **Laughter** We'd probably both want to spend time with the baby.

Anaya has been having a rough go the last while. Her muscles in her little neck are sore and stiff. She whimpers when she is picked up. She now turns blue even when on oxygen sometimes. She seems to be unable to take a breath. She tries desperately to yawn, but her little chest muscles ignore her brain's request for air. Generally when this happens it is when she is awake. I have been watching her like a hawk, and when I see it I give her one quick puff of mouth to mouth. One puff is always enough to help her muscles remember to work. Then she starts breathing on her own. The times the are a- changing. How I've feared this stage of the progression of her disease. The time when the suffering begins to eat our beautiful moments and I'm faced with terrible decisions. The doctor says that a bi-pap machine at night for Anaya would be like having her on a ventilator. That it would be a life-support. I've always thought that we wouldn't do life support. No "heroic" measures, or crazy invasive machines will be used to keep her beautiful perfect little body alive. That was decided long ago. But where is the line? She needs a little bit of help. The occasional puff of air. The sensation of asphyxiation must be terrifying for her. My baby, my little love. What am I going to do? How am I going to survive watching my baby die?

Well it takes rain to make rainbows.

I got in trouble this week from our nursing company. They are called "Resource-ability" and they get all pissed off every time I mention the names of our nurses in my blog. I've tried to explain to them that I have a right to use the first name of my nurse if given permission from the nurse, that it in NO WAY WHATSOEVER violates their "confidentiality" policy about "Client privacy". Anaya and I ARE the client. Needless to say, there was a bit of a showdown about how Anaya's nurses are supposed to be nameless and faceless. No pictures, no names. I was definitely upset. These women are part of our family day-to day. I trust them with the life of my child. They play a HUGE role. It ended with one of our nurses taking an "Indefinite leave of Absence" which is about to become a permanent leave - how am I supposed to trust someone who ditches me without a nurse for five days? It's enough to make me want to curse publicly.

Thank God Katie is here. Katie from Texas. Katie Shutt of The HumanKindness Initiative. I'm not certain if saying her name three times is enough. This woman has the energy of a supersonic ping pong ball. Her deep throated laughter and contagious smile are seconded only by her boisterous voice that rings in my ears the way sunshine tickles my skin on a perfect day. She came from Texas on Thursday. I met her at the airport in Spokane. It was interesting to meet the face that goes with the voice I've been talking to on the phone for at least an hour every day. Initially it was weired. Like trying to sync my brain into understanding that that body, Katie's little body, is inhabited by a soul much larger, brighter and louder than any other I've ever met. Then we started talking and within the hour we were synced and comfortable. It was an incredibly quick 3 hours of driving. We have a lot to talk about. We are like twin sisters that were separated at birth (at least our spirits feel that way). I've never felt so comfortable with another woman. I feel like I have a kindred spirit, a new family member. I'm so happy about it.

The day after Katie got here we no longer had a nurse, so we've been with Anaya the whole time. Our other nurse, let's call her "Carolla" is away and won't be back until Thursday. Taking Anaya out can be difficult. She needs to travel with her oxygen, her suction, her emergency medicine and all the stuff that normal babies need. Lately I've been taking her everywhere with me as I show Katie what Canada is like here in the Kootenays. Our car seat for Anaya is a joke. It's a carseat for regular toddlers and it does not support her little body or her head in anyway that is good for her. I asked our "Physio Consultant" about the possibility of getting her a car-seat that she can actually USE and got blinked at with incredulity. So all we have is the Wal-Mart seat that she folds into like an accordion, her spine bent and to the side, her head lolling back, her legs sticking up at an angle that hurts even MY knees just to look at. She always ends up choking because her head is too far back and she can't swallow the saliva in her mouth. Then I have to pull over and suction her. It's really very awful - why the heck don't they make special car-seats for disabled children? Is my physio consultant telling me the truth? Do they really NOT exist here in BC? If anyone knows different please let me know immediately.

On a positive note - we have been having an incredible response from Anaya's Website and The Anaya Initiative. People have been sending books for the Library of Hope, wind spinners for the yard, and postcards to Solara. It's been fantastic to have those moments of joy when the mail arrives. It is something me and the girls look forward to like a child at Christmas. When a new book arrives we try to ensure they are organized to make certain that everyone gets a thank you and the books get posted on the library page, but I'm behind in it. It's just not as important as other things have been this week. I'll get to it soon enough. I'm behind in my e-mail too. So if you've emailed me and you are waiting for a response - please be patient with me.

I'm thinking of a shoulder I could cry on, but I'll end up laughing instead. There's just something too funny about stressful situations. Everybody knows who I am, what I feel. My heart is an open book. Sometimes being anonymous even for a moment takes the weight of the world off of my shoulders. I only wish I was a little stronger and could handle a little bit more. I need a little more Celtic blood I think....