Big eyes

For Felipe...

Thank you for being such a strong support for Anaya. Can you send me an email to maraglow@gmail.com ? I'd like to email you back :)

Jan 31, 2010

The heavens opened today and the sun shone down from a crisp blue sky, catching diamond glitter flecks in the air. It's days like today we find so much joy in being alive, sharing this beautiful day together. Anaya has had a good day today, with less seizure activity than before. I've been asked to bring Anaya to see the world expert in Krabbe Leukodystrophy in North Carolina. Dr Escolar may be able to suggest treatments, meds, and therapies that will help keep Anaya comfortable as she progresses on this journey.

I got our passports in order but finances are an issue. It will be a week long trip across the continent. 2 days of travel each way, driving and then flying from Spokane. I'm going to ask family and friends to help us pay for the trip to take Anaya to see this specialist. I think it is very important that we take her as soon as possible. Anyone want to help me organize a fundraiser?

On another note, My older daughter has gone into an emotional slump. Being 8 is the new 13?I can't help but wonder if my sadness has affected her. She's been feeling bad about every little thing and I'm distressed about how to help her and make her feel better. She says she feels "guilty". Guilty for her thoughts. I'm taking her to the doctor. I think she needs a councellor or a child therapist. We can all use a little help to get through these times.

I think we found a home in Nelson that is pretty perfect for us. It has 3 bedrooms and is cute and clean. It's on a direct hospital route. It's yellow and green with big windows. I'm stoked about it. We just need to make sure we can fit our bed up the stairway to the bedroom before we sign a lease.

The community futures business project I'm working on is coming along. It is "Nelson staffing" and basicly I find temp jobs for Brent and I to do for now, until we can hire a few employees. I'm finishing up some marketing materials and will be pounding the pavement distibuting them this week. Hopefully everything will stay sane. Sometimes I feel like there is no way I can keep going with all these things- but I have to trudge on. We need to pay the bills. I'm glad to have the flexibility to be with Anaya when she needs me. I wish I could be with her all the time. Our moments are so precious.

Jan 28, 2010

I have bad news. Anaya started having seizures last night. I was up with her all night and I've made the decision that we must move closer to Nelson. We have to give up our beautiful home here in Procter. Anaya is very fragile right now and we need to maintain her comfort as best we can. She is our highest priority. Please help us find a place to live. I have to break the news to my landlords, I know they'll be sad to see us go. I wish with all my heart we could stay.

Home Needed in or very near Nelson for family of 4. One of our children, our youngest daughter, Anaya, has a very serious medical condition and we need to move to be closer to medical services (Dr's, Hospital, Hospice). Currently we live 45 minutes from town and it's too far in emergencies. Optimally we need a two or three bedroom house/ unit/duplex /townhouse/ suite that is accesible without too many stairs. We need to reduce our expenses so that we can spend time with her as she completes her life journey. We'd love to spend less than $1000 but can afford up to $1300.

We are outdoor enthusiasts and take pride in keeping our yard beautiful. For the past 1.5 years we've been responsible for an acreage with fruit trees, perennial gardens and way too much lawn - and we took good care of it. We love it here but we must move. Please help us find an awesome new home!

We are responsible respectful tennents with excellent landlord references. We have a medium well behaved dog but are willing to give him up if need be. Please if you have a place call us. If you know of someone else - please have them call us. 250.509.0593

If you wish you could help but don't know how please contribute to Anaya's moving Fund by clicking the donate now button on the right of the blog.

Jan 26, 2010

We've been sent home to continue recovering. Unfortunately I now seem to have the flu and have been very sick for the past 24 hours. Anaya is still gurgly, but it's mostly in her throat instead of her lungs, which is good. Brent and nurse Joanne are taking care of her. I've been sleeping. Our little warrior is still strong :)

Jan 24, 2010

I've always been an emotional person. Throughout my life I've made most of my choices based on what my heart felt. I've always walked a path of difficulty. My heart doesn't always lead me through what my dad would call "the smart path through life". Apparently I like the hard way. I have loved others, and been loved in return.

I find myself walking another difficult road filled with emotion. My baby lays helpless in my arms, while a disease eats away at the myelin on her brain cells. My little love is a little closer to getting her wings every day. Being with her, comforting her, snuggling her, kissing her delicate skin, I come close to my own mortality. I am watching a part of myself die.

I close my eyes and imagine myself as her. What can I do right now, in this moment, to bring love and wonder to her life? I unfasten her sleeper, lifting her chubby baby legs out one at a time. Gently and firmly I massage her feet, her ankles, her knees. Her little feet, having never known weight bearing, have turned inward. Each ankle is rotated and flexed forward and back as I help her with range of motion exercises. I feel her joy at having her body moved and I coo at her and babble out the thoughts in my mind.

Is love the reason for human existance? I don't know. But it's the reason for mine. I didn't know how much love could hurt - and yet it is a pain I want prolonged. I do not want my daughter's life to end, I do not want this love cast out into the unknown. I am frightened for her. I try not to be. I attempt to live in the moment and embrace the cycle of mortality. I believe death is a doorway.

I simply can only give her my love. I can give her comfort, small joys. This is what I myself would want.
"Mother is the word for God on the lips and in the hearts of children". I will hold my angel's broken body gently to not cause her pain - seeking to bring her moments of wonder and joy. When the time comes, and Anaya gets her wings, she will be free of it's cumbersome limpness to explore the fundamental nature of existance as pure energy.

I can see that in her now, in my minds eye, laying here in the hospital bed. I imagine all sorts of wonders out there for her to explore. I can envision her smile, I can hear her voice calling out "I love you Mommy!"

And I know it's true.

So while I'm sheparding her body through this life, I am blessed to see the beauty of my soul reflected in hers. I am able to give her the love that I myself have always needed, and it heals hurts buried deep inside me. I may follow my heart around more than my head, but for the moment I'm okay with that.

Anaya brings me insight. Her day has been mixed. Moments of clear breathing followed by moments of intense wetness. We have her on antibiotics now. I hope she gets better soon, so that we can snuggle up with the rest of the family at home.

We really need some fresh milk donations. So if you know any loving lactating women in Nelson please tell them - there is an angel nearby that needs their help - even a little bit adds up.

Hospital

Jan 23, 2010

I have brought Anaya to the Nelson hospital. She has very wet sounding lungs and a fever. We've been admitted and are cuddled up in bed. I just finished doing some "chest Physio" with her (special percussions over her lungs) and she actually sounds a hell of a lot clearer now. They poked her toe and dripped some blood into a vial to run tests on. I've got her on slow continuous feeds to help her keep the milk down. She's having myclonic seizures in her sleep. (common- even in normal people)

Thank you Penny for driving us to the hospital. XO.

I'll keep you all posted. Lots of love.

Jan 21, 2010

So far it seems to be a better day for Anaya. She slept well last night and is keeping her feeds down :)
Katie donated a bag of fresh milk and I'm interested to see if Anaya takes to it easier than the frozen milk that has been her diet for the past month.

Jan 20, 2011

I can hear Brent throwing up in the bathroom. Looks like the flu has hit our house. I think I've figured out a way to get food into Anaya. She seems to have excessive gas in her tummy that leads to the vomiting. I have found that if I vent that gas every few minutes during this last feed that I can prevent the vomiting. There hasn't been any blood in her vomit since yesterday morning. I've been on the phone with our doctor several times each day. If need be we will go to the childrens hospital - as there is really nothing they can do for her in nelson. No one there can find her veins. She's keeping this feed down so far, and has kept pedialyte down- so she's hydrated.

I hope I don't get this bug. I need to take care of my sweet pea.

Jan 19?

Anaya has been sick. Really sick. Vomiting and diarrhea and apnea. I'm not sure what's causing it - but i tried giving her one ounce of Neocote (hypoallergenic liquid food) the day before.  She threw up immediately and then threw up blood 12 hours later  I'm staying right here with her. I've been giving her pedialyte to help keep her hydrated. Yesterday she didn't tolerate her feeds at all. She just threw up again. I have to go.

Jan 16, 2010

There is a stillness in these wintery days. Time slows and each moment becomes lengthened. Anaya sleeps often, her baby lips trembling while dreaming. I run my fingers through her hair, around her ear, beneathe her chin. Her skin is so soft. The only comparison I can find is like fresh silky rose petals. Her flesh yields to the softest touch like softened butter. The beauty of this little butterball astounds me.

She calls out with a mewling cry when I lay her down to change her. Her arms sometimes rise from the counter and twitch rhythmicly in muscle spasm. I lift her feet, bending her at the knees and hips to clean her bottom before putting her in a clean dry diaper. The muscles in her legs tense up and she cries out in pain, cringing her whole being. I hold her tight and soothe her, helping her to relax. The pain abates, she settles.

Picking her up and holding her to my chest my lips smack a kiss on her crown of blonde. I sing to her and we shuffle over to the stereo. "What do you want to listen to?" I ask her. She breathes and sighs eyes darting left to right. I select a CD from the drawer,we listen to harmonious melodies and dance.

Live in the moment - I tell myself this. Feel deeply these sweet joys. Her baby heart flutters against mine and we spiral towards mama-baby love infinity. A creator would surely love all of creation thusly.

I find myself at a loss sometimes. I simply don't know how else to behave. I continue putting one foot in front of the other, sometimes feeling like life's sleepwalker. Anaya pulls me out of my reverie, smacking her lips, reminding me of a baby kiss never known. I press my cheek to her lips, she smacks again. I tell her how sweet her kisses are.

It's time to pick her up again. Our night time cuddle begins. Soon we'll be headed for bed. I'll kiss her cheek for you, our readers, who love this fragile princess. Goodnight.

Jan 13, 2010

Anaya has been sick with a cold the past few days. I've had to remove her scopalimine patch, that dries up her extra mucous, to allow her the ability to clear the phlem from her lungs. Her little cheeks are flushed pink
and she is constantly trying to clear her throat. It's been a rough couple of days. Our nights and days find us best buddies with the suction machine. In her sleep she sometimes wakes up choking and I help her the best I can.

Today we went to see Dr. Fitzsimmons for Anaya's first G-tube replacement, and so she could have a listen to Anaya's chest. Replacing the Mic-key GTube was simple. It was just a matter of removing the old one, lubing up the new one and sliding it through the stoma (hole) into her stomach. Easy peasy. Much nicer than the NG tube was. The doc thinks Anaya's lungs sound okay. I'm glad this cold didn't turn into pneumonia.

The snow here has been huge and beautiful. More than a foot has fallen here in the past two days. We borrowed my friends truck to go to the Dr. today. It's much better in deep snow than my van is. It's a shame that rain is predicted in the coming days. It's gonna be a slush fest.

Here's hoping Anaya gets better soon!

January 9, 2010

I know it's been a while since I wrote. It's been a busy week. Anaya was getting over her cold, Solara went back to school, I did lots of computer work and filing at the firehall, we went skiing and the nurse called in sick for three days.

Anaya is having a great day today. I gave her a warm bath, supporting her while she floated in the water. Bath time is her favorite. Then we did her exercises and I gave her a nice massage. I dressed her up warm and we went for a long walk down to the general store and back. I saw many of our neighbours and they all stopped to ask how the baby was and exchange pleasantries. I love knowing the people who live near us. There are lots of supportive folks.

Brent went out with a friend today and I got to take care of the girls. Solara had a friend over and they built a snow castle.

Gotta go take dinner out of the oven.

Anaya and Snuffles the bear

Jan 1, 2011

Happy New Year!

I've been thinking about the past year today. I remember a year ago Anaya was well still. It was in January that she became extremely irritable and February when she started choking at the breast. We were in the children's hospital for the first two weeks of February. We drove home on Valentines day. We thought we were taking our daughter home to die - because that's what we were told to expect.

Quickly she lost her smile, the movement of her body, her cooing, her sight. How I miss those eyes - her soul looking into mine. We tried everything and stopped at nothing to help her. Perhaps that is why she is still alive today - perhaps not. We cannot know what mysterious goings-on happen in her little body. We can only note the changes we see and feel.


There is so much dynamic in our household. Solara is an energetic 8 year old vying for time and attention, but never has displayed insane amounts of jelousy over the attention Anaya gets. Brent is quiet and maintains some kind of inner calmness I could never duplicate - except for when he becomes impatient. Our dog Buddha is timid and hides away much of the day on his special chair. Anaya is like the hub of our existance. Every move we all make depends on her and how she is doing that day. We all love her to bits and cannot imagine our lives without her...and there are our nurses too, carrying on quietly around the household, reading to Anaya, feeding her, giving her the medicines and vitamins that help her. The day to day here is a routine that feels somehow in between worlds. The world before Anaya and the world After Anaya. How can I imagine our home without her?

At night I lay beside her, her crib snuggled up next to my bed. She sleeps on a specially made mattress that angles upwards to prevent her from throwing up (refluxing) in her sleep. She sleeps on her stomach so that the saliva flows from her mouth onto a clean cloth so that she doesn't have to choke on it in her sleep. Sometimes nights are worst for me and Anaya. She breathes in and out in loud bubbley rasps when she's got a cold, as she has now. It puts me on edge and makes it difficult to fall asleep. I wonder to myself "What kind of life is this to be so comprimised? How awful must it be to struggle to breathe waking and sleeping. Would death be a welcome release from this imprisionment of her soul?" I cannot guess nor know. It is not my life it is hers. I am simply here to love her and keep her comfortable as possible on her journey. God how I wish I could cure her. How I miss her smile and her laugh.

One day, in the place beyond death, I shall see her smile again and we will dance and play together in the sunshine. She will laugh and run with her sister and sit on her daddy's shoulders. In the place where there is no time. Until then my love wraps around my wounded angel and I feel her love for me in my heart. We will continue on together - no matter what the struggle.

Anaya seems limited in her perception of the world. I know for sure that she is aware of her breathing, and of the voices of our family. She enjoys music and being read to. In times when I question her intelligence I am reminded of Helen Keller, who was blind, deaf and mute. She turned out to be able to communicate and function - so why can't Anaya? Although I don't think Helen Keller had a demyelinating condition of the brain.

We hope the new year will bring good things for humanity, for our family and for Anaya. We are eternally grateful to all of you who have helped us by reading, commenting, contributing time and money and for being there for us in your hearts.


A million thanks to Courtney and friends for buying Anaya this magnificent generator to keep her safe when the power goes out!