Event on Sunday

To all of our Nelson Readers...

There will be a fundraiser event for Anaya this Sunday June 5, 2011 at Bodhi Day spa from 1-4 pm. It is a wine and cheese by donation and also there is a silent auction and door prizes. Please stop by the Hume Hotel and join Anaya and I at Bodhi Day Spa for a hug and a chat :)

Gentle Tasks

She awakens with a startle. Her long lashes flicker, sweeping down to brush her cheek, flying open wide. Hazel eyes stare through me. She moans and I hear her voice in my heart. "Mama?"
"Yes, little love. I am here. Good morning sunshine. It's a beautiful day today." I move my fingers softly over her golden hair, tracing hearts on her forehead and running a tickle down her nose. I kiss her cheek. She moans again.

"Mama, I hurt."
"I know your hurting sweetheart," I whisper "let's just stretch out your legs gently and get you out of this wet diaper. Then I will give you your meds and run a bath for us."

I pull the covers from her, removing the cocoon of warmth that has surrounded us. Disconnecting her feeding tube from her stomach and removing the oxygen prongs from her nose, I lift her to the end of the bed and set her down, propped gently on a fluffy pillow. She lets out a contented sigh, stretching her legs straight and pushing her body as hard as she can against the pillow.

"Ha!" I laugh at her. "Must feel good to get straightend out after a night of sleeping on your side all curled up against mama." She mews a little sound at me, as if in agreement. I dash to the other room and start the bath water. Nice and warm. Returning to her in seconds I say "I've got the bath going, soon you will be floating in the nice warm water and I will sing to you."

Pulling the snaps of her sleeper open the fabric presses against my fingers in all it's baby softness. What will I do when she doesn't fit in sleepers anymore? I wonder. Removing it from her is similar to undressing a sleeping person, or someone who is unconscious. Her limbs twist easily and fall under the influence of gravity and I must be careful to withdraw each one with care. Removing her diaper she flinches. I notice a redness around her inner thighs where her beautiful baby chub has deprived the skin of oxygen and a rash is forming. Every day I am careful to clean and dry my little love, and yet still we fight these darn crease rashes.

Determined to win the war of the crease, Anaya and I climb into the tub. I hold her floating in the water, using my knees and feet to position her so that I can use my hands to wash first her stoma (G-tube opening in her tummy), then her body, then her hair.

Her back arches and her legs push against the wall of the tub, a firm and deliberate movement on her part. "Push! Push! Push!" I encourage her and she pushes again. Taking a deep breath in she relaxes. Her skin is flush, her lips reddened with highly oxygenated blood from the exertion. She sighs and in that sigh I hear her thoughts.

"Feels Good! LOVE floating! Love Pushing!"

Curly waves of wet golden hair float around her head and I wish I had a camera handy. My fingers find the knots in her neck muscles and I massage them gently, working from her shoulders and up her neck to the base of her skull. Like anyone else Anaya enjoys having her neck and head massaged. "mmmmmm" Contentment.

Cleansing finished it's time for swimming like a mermaid. I begin singing songs from "The Little Mermaid" starting with "Part of your World." Many of you may remember this song from your youth, or your children's youth. Many may remember it from the last time I got good and drunk at the Procter Community Hall Karaoke night more than a year ago. That was the first and last time I drank that much in the past 4 years lol. I ended up singing "Part of Your World", solo, with no music. And I had fun doing it. Lots of fun. But enough about that.

The walls surrounding the tub echo back my voice and the water surrounding us gives it a richness and a vibrancy that can only happen in the shower (some of you may know what I mean) Anaya sighs and floats, occasionally pushing her legs against the end of the tub, while I raise my voice in a sunny salutation of my little love. I allow the song to take me completely, expelling love and frustration, joy, hope and despair.

"I want to be where the people are. I want to see, want to see them dancing, walking around on those...what do you call them? Feet....Up where they WALK, up where they RUN, up where they Play all day in the SUN, wandering free...wish I could be, part of that World..."

That's the Camara sweetend condensed version.

Oh! Baby needs me got to go.

Home!

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.

Photo shoot with a friend :)

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.

I LOVE YOU ALL.
(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?

Fresh from the bath!

Anaya being transferred

Angelic Anaya

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...

http://instantteleseminar.com/?eventID=19839927

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,
Camara

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 natalie.degoey@gmail.com 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

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.

Prettied up for outside :)

Wide eyes! Bright Soul!

Suddenly very sick

Anaya having her ECG during crazy heart racing/ seizure event

Click here to see video


http://www.youtube.com/watch?v=DenrH7qpWD4&feature=youtube_gdata_player

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 narcotics....wow 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)...my 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 @ gmail.com and I will respond as soon as I can.

Thank you and God Bless

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". http://www.canuckplace.org/ 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.

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!

Anaya's Milkmaid!