Wednesday, June 30, 2010

Wednesday June 30, 2010

It seems to be a lovely summer day. Anaya and I slept quite peacefully last night despite a broken feeding pump. I set my alarm to awaken and feed her manually. She doesn't seem to be any worse for wear about it.

Anaya has had more difficulties the past couple days. We are having trouble maintaining a balance with her secretions. Joanne suctioned her three times this morning, and my sweet little angel was very brave.

Having Solara home from school may prove to be more of a challenge than I anticipated. Her lively energy rocks my morning like a storm. I'm not quite sure how to tackle this one. She doesn't want to sit still, which I do frequently (milk cow that I am.)

Hopefully the days will settle into something manageable.

Sunday, June 27, 2010

Sunday June 27,2010

Yesterday was as beautiful a day as anyone could have asked for. The sky was blue, the sun shone. We had a family breakfast at the bakery, joined by neighbors and friends. We spent the day in the yard by the swimming pond. Between Brent and I we took care of Anaya, as she was doing really well and didn't seem to mind hanging out in her stroller. We had a few friends over for fun in the sun.

I put her toes in the water for the first time. At first she wiggled and made a very funny little mewling growl that sounded like "oh no oh no! it's cold!" It was her 10 month birthday, and I figured we needed to do something to mark the occasion. I got the dip on video...I was thinking of posting it on here but I'll only do it if there's interest in seeing it. If you want to see the first dip leave a comment :)

Around 5pm Anaya started having issues. She threw up a little bit of milk, but had trouble swallowing it back down. That leads to reflexive swallowing and gasping breaths. I took Anaya in the house and suctioned the yukkies out of her throat. It left her blue and gagging. She started having small jerking motions in her arms and her eyes rolled back. She stopped breathing. I rubbed her chest with my fingers and encouraged her to take another breath. I talked to her..."Come on baby, breathe baby breathe" I placed my mouth over hers and puffed some air into her lungs. She coughed and took a deep breath. I wiped her mouth out with a recieving blanket.

We sat down in the rocking chair that views the back yard. I held Anaya in one arm and held the vapour nebulizer up to her face with the other hand. I called Brent to bring the Oxygen bottle because her breathing was so slow, so shallow. I got her all hooked up and then I just sat there and snuggled her and kissed her a thousand times thinking "This could be it, this could be our last day, our last moment"

My throat clenched and my heart stretched as wide as my house. Oblivious to what was going on with Anaya, my roomate and his friends smoked and drank beer just on the other side of the window. I thought of asking them to leave. I thought of creating sacred space. I decided not to ask anyone to leave. I created sacred space where I was sitting. I created and held the space of love for Anaya around our rocking chair- no matter what anyone else in the house was doing.

Watching my baby struggle with her lips tinged blue, my anxiety peaked, then passed. I found a shelter of strength knowing that I am her mother, I know of all the things she wants close to her, it is I. I bring her comfort. I am doing all I can for her. She knows I love her. If she chooses to pass on such a glorious day, her 10 month birthday, then that is her choice and it is not mine.

Thoughts come and go like clouds mirrored on the surface of a lake. I rock Anaya and hold her warm body to my heart. The oxygen is helping, her lips are pink again, the nebulizer is helping to moisten her dry throat. Did her medicine over dry her today I wonder?
Did I spend enough moments with her? Have my actions counted? Have I left her too often without the comfort of my presence? Have I been a good enough mother to her? Could I have created some kind of miracle that I missed in passing?

All these thoughts come and go. We rock. We watch. I pray and kiss and love.
She turns pink, her breathing regulates, she stops her jerking. Now she is just a sleeping baby in my arms. It's been two hours. I notice that I missed dinner.

I turn off the oxygen bottle and stand up, walking through the house in a sort of daze.
"Where are you going?" Someone asked.
"As soon as I pump I'm going to bed" I reply.

Entranced in the closeness of the intense moments Anaya and I just shared I could not communicate myself. I meditated while I held her and pumped milk. I chant in my head "Galactoceribrisidase, Galactoceribrisidase" That is the enzyme she needs to make to get better. If only I could help her make it. I visualize her cells making Galactocerbrisidase at the ribosomes. I visualize it breaking down the fatty chains and the remnants being picked up to make myelin.

Pumping complete, Anaya and I head upstairs for bed, pausing for a glass of water and a milk bag to connect to her feeding pump. Daddy always takes care of that part. As I close my eyes, after kissing her sweet cheek one more time, I think to myself "that could have been the end, but it wasn't" and I smile and snuggle up to her.

Today was a regular day. No events like the one of the night before. We had a low profile day. Anaya and I took our breakfast and coffee outside in the morning sun. As a family we took two walks with the dogs, one down the road, one to the store. Solara played with some girls and Brent made an incredible salad for dinner. Yesterday's events still permeate my being. Each moment is even more precious today. It made me realize how close I might be to losing my little love, and how incredibly unprepared I am to be without her.

Thursday, June 24, 2010

24 June afternoon

We had a great time at the park. We ran into Meeri and her kids at the beach. Meeri pumps milk for Anaya. We had a good chat.

Sitting on the beach holding my precious babe and watching my older daughter frolick in the water I felt at peace. Anaya's breathing was great all day. No major problems.

Then we went to the chiropractor. Dr. Remi took some x-rays of Anaya's spine, and of mine. We are definately out of alignment. Dr. Remi is going to help us get re-aligned. He's got a new clinic down by the car wash. Sparkling life family chiro. Everyone should have their central nervous system tuned by this friendly young man. :)

Thursday June 24, 2010

We awoke to a clear blue sky, a beautiful sunny day. Anaya slept peacefully on the pillow beside me, smelling slightly soiled. I kissed her cheek to wake her up and stretched out her legs and back to change her diaper. As always her little mews of protest came forth. She just doesn't like the cool air on her bottom. I noticed that her breathing was nice and clear and her skin warm and rosy. Sometimes she can be quite cool to the touch. Kids with Krabbe have temperature regulation issues.

I decided quickly that this was a day to take advantage of. Anaya and I will pick up Solara early and go to the playground at Lakeside. Without a nurse today this is sure to be a challenge but I'm up for it. After that Anaya has a Chiropractic appointment with Dr. Remi.

Leaving Anaya on the bed I step to the closet and pick out a summer dress from when I was pregnant. Hey it still fits! lol. I choose a pretty little dress for Anaya with a multicolored floral pattern. It was given to us by my friend Bryna and her baby Ella. Very sweet little dress. I'm glad Anaya has an opportunity to wear it.

I throw my hair in a bun, bundle Anaya in a blanket and zip down to the village bakery for coffe and eggs. It's hard to cook for myself on nurseless days, and I like chatting with Micheal. We run into Catherine Nixon. She is happy. It's good to see happy people. She's grinning like a schoolgirl. :)

I hope the weather will hold. I hope Anaya will have a stellar day with her sister in the sun.

And we are off to town!

Wednesday, June 23, 2010

Wednesday June 23, 2010

Anaya slept peacefully last night. She awoke this morning with thick gurgles in her throat but I gave her a vapour nebulizer and suctioned some of the yukkies out. She seems to be a bit better now. Brent is in bed sick and home from work today. The tree fuzz floating in the air is just killing him and none of the antihistamines he's tried are relieving it. He didn't sleep at all last night. Poor guy.

The forecast for today is a mix of sun and clouds with a high of 26 deg C. Woohoo!

Today Anaya and I will spend the day outside exploring our garden and working with Joanne. There are lots of weeds in the bean patch that I need to get a handle on. The greens have really benefited from the cool wet weather and I hope that Anaya will receive the goodness of them through me.

My outlook for the day is promising. I hope Anaya will be able to breath easy in the fresh air.

And I see the smile in her eyes. Thanks for reminding me Danielle.

Tuesday, June 22, 2010

Tuesday June 22, 2010

June has thus far been kind of dreary. The rain brings it's life giving water in sheets of grey and white. When the sun peeks through the clouds the greenery of the Kootenays is astounding. The thimble berry bushes are bursting with flowers, the radishes of my neighbors garden are already harvested, and yet - it feels as though we have only had a few sips of summer.

Anaya has been weathering the storm like the trooper that she is. She has remained fairly steady in her day to day routine. She sleeps, we feed her, we massage her and do excersizes. She gets her special medicines and remedies. She goes for walks with me and Joanne. She loves going on walks. Rain or shine we bundle her up and take her out to experience the world. It seems as though the sounds, and sights and scents really reach out to her and she responds to them in a calm, serenely aware way.

Speaking of "sights", we had Anaya in to see Dr. Fitzsimons last monday and she checked her eyes. Her pupils do not constrict when light is shined into them. The Dr. told me this could mean that she is no longer seeing. Sometimes it seems like she does. Sometimes it seems like she doesn't. None of us really know because she can't tell us. They could do a test at the childrens to find out if she's seeing but it wouldn't matter to me. She is how she is. Even if she isn't seeing she's got a lot of other senses that help her to experience the world.

For instance the scent of wild roses growing on the side of the road after a rain. MMMmmmm....and the peppery wild smell of lupins on the breeze. The feeling of rays of sunshine on her skin. So many wonderful delights.

At the Dr visit we also weighed Anaya and now she's almost 7kg. That means she's gained 2 lbs since february. At least she's growing. Her muscle mass is low because she doesn't really move. So most of her is skin, bone, and baby fat. I love her little rolls of baby fat.

I haven't written much since the fundraiser on June 11. I read a speech aloud that day that really shook me. Bearing my souls heart out loud in front of a group of people took all my strength. I attempted to bring bravery but the tears spilled down my cheeks, my breath caught in my chest and the sobs of grief threatend to steal my voice. I overcame it with a hug from my mother in law and finished my speech. Since then my inner voice has felt quite weak. Sometimes I wonder why anyone would want to hear of my challenges with Anaya, my sorrows, my bittersweet moments of love. Isn't it kind of depressing? I know I sure get down.

The fundraiser was not as successfull as I had hoped. After expenses we raised about $1200 to split between screening and research and our family. The money hasn't come in yet because some people haven't gotten their auction items yet. The auction coordinator is having difficulty getting a hold of some people etc. I've decided that we will just give $600 to the hospital for screening and send the other $600 away to the research lab at Hunters Hope. A few of the items didn't sell and I'm going to put them in an online auction when I have the time and energy to do it. I'll keep you posted on that one. There's an autographed poster of football player Jim Kelly. Any interest?

I've been down for almost two weeks. I find it difficult to laugh and smile. My friends say it's likely the rain and that I'll feel better when the sun comes out. I certainly hope so. This feeling of hopelessness and despair is bone deep and I feel washed up on a cold lonely shore. Even my love is sad and my memory is weak. I've been late for appointments and having moments of incredibly stupid forgetfulness. To anyone I've offended with my tardiness - I'm sorry.

I'm making a concious effort to find fun and happiness within. Yesterday I used the potting wheel Brent and Solara and Anaya gave me for mothers day. I successfully threw a couple nice pieces. Brent sat with me and we had moments together of creativity and it really helped my mood. Then I snuggled with Anaya all evening and kept her warm and loved.

Sunday, June 13, 2010

Dusk June 13

What is it to truly be alive? Is it the moments between our birth and our death? Gazing through the yard at dusk I see the spidersilks upon the wind blowing to destinations unknown. Sunlight flickers. I see the future a few seconds from now, the silk lands in the grass, the unknown occupants have discovered a new world, where ever they came from.

Arms full of soft sleeping baby, eyes taking in lupins, cedars, buttercups and roses. The children have romped through the buttercups, frazzled and frumpled. Has being trampled in joy hurt the buttercups or enlightened them?

Settling into the evening the fire built is hot and purifying. Is the death of a tree when it is cut down? Or when it is burned and releases it's inner light? Either way the beauty of a tree is only in its nowness. The moments of leaf, stem, swaying trunk, burning endings, all now.

She breathes soft whispers against my breast. I wonder at the plastic tube up her nose. How I'd love for her to be free of it. I have promised to take it out one day. The fire warms her cheek, bright now on my face. I consider thoughts of cremation and wonder where my belief in miracles has dissapeared to. God hasn't been very forthright with answering my prayers. My faith falls like lilac buds after blooming.

Am I failing in some way? Like moths drwn inexorably towards the light - are we not similar? Courting death on a planetary scale. We humans do not value life itself- but only our own. Would you lay down your life to save the life of a shrimp? Me neither. Hell I'd boil it alive and eat it with Garlic butter. Is this wrong? Where is the human guidebook for proper sustainable living on organism earth? Is there a path somewhere within me that will reveal itself?

I'm here, my thoughts float freely, my mind melts into my heart's throbbing ache. If only any of these thoughts had a pointedness that would bring my Anaya back from the line she walks. Where is her mind, her spirit? What baby thoughts has she?

If anything, please let her feel the cocoon of love I weave around her. Please let her know the safety of my arms, the softness of my kiss.

These moments of melancholy love have meaning. Who knows where we will land.

Spidersilks on the breath of life.

Friday, June 11, 2010

Friday June 11, 2010

It hasn't been a week of writing for me. The endless rain has Anaya and I bunkered down at home, awaiting the return of the sun. My older daughter, Solara, had a birthday party last week that had 12 children playing outside in the pond in the pouring rain. That looked fun. Anaya and I watched from the window.

Today is the day of the fundraiser Gala and we are going to get ready to go outside and pick wildflowers for table centerpieces.

I really hope to see some of our blog readers at the event!

Love to all of you,
Camara and Anaya

Wednesday, June 9, 2010

Wednesday June 9, 2010

Sometimes life gives you a bowl of cherries. Sometimes life gives you lemons. I'm trying to make cherry lemonade. :)

Friday, June 4, 2010

Friday June 4, 2010

This week has been a hard one for me emotionally. Anaya has been very sleepy and having breathing interruptions or apnea episodes that are longer than they used to be. I fear that she will become more and more sleepy and never wake up. I suppose if one has to go - going in your sleep would be the best way. It's just that I'll miss her so much.

Any parent that has ever loved a baby knows the feeling. The feeling where you just wanna snuggle them up and kiss their cheeks and protect them from the world. The way a baby sleeping conforms to the curve of your arms like...well I don't know what to compare it to. The way they sigh in their sleep and suckle on imaginary breasts in their dreams. This love is a sweet feeling, one that opens up the heart in it's splendor. Similar to the most beautiful sunrise you've ever seen - and never wanted to end.

For me this sweet love is amplified by my sadness. My sunrise has rainbows of many colors. Anaya teaches me how much emotion I can hold in my heart all at once.

So I will try to let go of the overwhelmingness of it all and simply feel this rainbow of emotion while I hold my sleeping love close to my heart.

Thursday, June 3, 2010

Thursday June 3, 2010

The picture above is of Anaya with her first hairdo! I put her golden hair into little tufted pigtails :)

Anaya is very sleepy today. She's been sleeping since bedtime last night. I awoke her this morning to change her diaper and started feeding her, at which point she fell back asleep. I feel as though the sleep is healing for her, and that it is what she needs. I'm going to try putting her in the stroller and taking her for a walk. Perhaps she will awaken to the nature around her.

Last night I added a button to the blog so that people can buy their gala tickets right here via paypal. The Prestige is quite adamant that they need to have tickets sold in advance in order to continue with the event. I know that a lot of people are planning on coming, they just haven't bought tickets yet. So if you are one of those people planning to attend but have not got a ticket yet please do so really soon - there are three ways to get your ticket. You can buy one with paypal up in the right hand corner of this blog, you can go to the front desk of the Prestige Inn, or you can call Tom and he'll deliver them to you. His number is 250-505-0275.

Anaya and I really hope to see you there.

Tuesday, June 1, 2010

Tuesday June 1, 2010

Anaya has been doing really great in some ways lately. The new medicine called scopalamine, which is to dry up extra saliva and mucous, is really working. There have been fewer choking episodes. I haven't had to suction her in almost a week. This is fantastic. The side effect of the medicine is that she is a bit extra drowsy, but it seems to be wearing down a bit. We were told that the drowsiness will eventually cease.

One of the things that concerns me about Anaya lately is her breathing pattern. As she is falling asleep she has gaps or apneas in her breathing which last sometimes 30 seconds. Eventually, as she falls into a deeper sleep, her breath settles into a more regular pattern. I just get the shivers every time she stops breathing. Usually I give her little chest a rub and encourage her to take a deep breath, which she does quite loudly and sometimes starts crying. I think the feeling of anxiety that she gets when she doesn't quite get enough oxygen really frightens her.

Our Nurse, Joanne, has been with us now for 6 weeks. She is an amazing blessing and I can't imagine this journey without her. She has a very grounded and aware presence. She is so patient and gentle with Anaya. I trust her with Anaya's life. I trust her with Anaya's death.

You may ask "What does she mean when she says she trusts her with Anaya's death?" What I mean is that if I were not present and Anaya were to pass away in Joannes presence I would not feel guilty. I would know that she was well taken care of and properly guided gently through the door of our transition into the unknown. Joanne is spiritual in the same way that I am. Her soul is rooted in her body and when you look into her eyes you know that she's "All here". I have seldom met someone who is so consistantly present and true to herself. She always communicates her viewpoint very clearly, and gets me to re-evaluate my thinking and helps me stay grounded into the moment.

We are so blessed to have her.

Yesterday was my eldest daughters birthday, she turned 8. She had a really great day. She seems very happy. As she kissed Anaya goodnight, I sang her happy birthday. It was a moment for the three of us. Kissing Anaya is like putting your lips to the softest cheek in the world. She is so angelic and it seems to radiate outwards in her beauty and softness. The golden hair on her head is soft like strands of silk. Her eyelashes are long and curly, even her scent is sweet and ethereal. MMMmmm smell of baby.

When Solara kissed Anaya goodnight I couldn't help but think that Anaya's presence on Solara's birthday was one of her most cherished gifts.