Wednesday July 21, 2010

Yesterday Anaya and I had an interesting day. It started out with Anaya sleeping in a new set up beside the bed, instead of sharing my pillow. We didn't sleep quite as awesomely as I had hoped. I think it will take some getting used to. I kept waking up to check her and make sure she was warm enough, and that her head was positioned properly to allow good breathing. She awoke with a gurgle in her throat, which progressed into a full on mucous bubble attack later in the morning.

Anaya and I travelled to Nelson, where we met Joanne for a bite to eat at "Bent Fork". It wasn't my morning for 50's memorabilia and bland eggs so I left rather dissapointed. We went to Joanne's beautiful abode where we set up Anaya's nebulizer machine and tried to get a handle on her secretions. Joanne stayed with her while I ran errands.

I went to the childrens consignment store to drop off some old sleepers and had an emotional meltdown. As I was labelling them with my number I came to Anaya's froggy princess sleeper. It's always been one of my favorites. It fit her for months. Suddenly I couldn't breathe, my eyes teared up, my heart split open and for a moment I saw myself sobbing my eyes out in front of other startled customers. That did it! I mentally grabbed the halves of my heart and forced them back together and sewed it up with self-assurance. She's still here, she's still alive, focus on the now - leave the past and future where they belong. Once settled I decided to keep the froggy sleeper, and bought Anaya a couple new warm-weather outfits. I headed over to Katie Sawyers to drop off milk coolers and proceeded to allow my emotions to flow. She leant me an understanding ear and gave me great hugs. We sipped spicy ginger tea and I allowed the warmth to seep into my aching heart and rejuvinate me.

I went back to Joanne's House and found Joanne and Anaya seated in the rocking chair still trying to get a handle on those nasty secretions in her throat. We decided that we would not take her to her scheduled chiropractic session. I went alone, still in an emotional space.

After the adjustment I picked up some blueberries to share at our planned group meet up in the park. We were to meet Anaya's milk donors or "Milky Mom's" for a blessing ceremony. Again I returned to Joanne's House. Anaya sat in a calm space and had cleared up considerably. I gave her a feed over the course of an hour and then we took her feeding tube out and put her hair in pigtails.

We walked to lakeside park and set down our blanket in the lush grass with the other mamas. We were joined by Rosalyn Grady, a spiritual elder, who led us in a ceremony of blessing for the mama's and their children. We each made a SEED BUNDLE TO REPRESENT OUR HOPES AND LIFE for the next generation. Then it was my turn to speak. I thanked the mamas for giving Anaya the gift of their milk. I explained how much it helps her, how much we appreciate their contribution to her health. Tears poured down my face as I relayed my gratitude and love. I then led the circle in a brief meditation on Presence. Katie gifted Anaya with a necklace from Divine Mother Ama- the woman who hugs.

We were joined by Jean and Claire - beautiful musicians who played music for us. It was beautiful. In all it was an incredible experience. I danced with a very healthy chubby baby and delighted in her joy. I danced with Anaya too, who seemed to love the music. Here are some more pictures and a video is to come.

Friday July 16, 2010

Penny and Anaya Wednesday evening.

Anaya has been having an excellent week. Her secretions appear to be well balanced and she's getting bigger. I'm also doing well this week. Smiles and laughter have reentered my life, thank god for the sunshine!

I promise to write more next time.

July 11, 2010

.



The sun this past week has been amazing. Anaya enjoys the sunshine on her skin. Her and I danced in the grass. I held her up and spun her around in moments of joyous celebration of life.

I have come to know that she is a part of my life's greatest work. The legacy and mark that I leave on this world. The lessons that she teaches me, and teaches through me, the lessons that she teaches others, they are her life's work. It is so amazing how a little baby can be such a profound influence. Her innocence and sweetness touch everyone around her. Her beauty captivates my heart and inspires me to love more deeply than I have ever loved before. Her fragility reminds me that all life is a blessing and each moment is a miracle manifested.

When I kiss her cheek, and each finger on her hand, the softness of her skin is like rose petals. Her pudgy baby rolls yield beneath the touch like softened butter. It is part of her illness to be unable to metabolize fatty acids on a cellular level, thus she is becoming a pudgy baby Buddha. She is so cute, and it makes me smile, but I know that these fats are poison to her, that instead of giving to her life force they are stealing it away.

My rosebud has slept most of the day away. Last nights festivities at the community hall did not break through her sleep. I danced to the band while Anaya slept in the arms of trusted friends, and in mine. Amazingly, in the midst of the festivities, my brother Christopher and I spent quality time together and talked about life. The choices I make each day revolve around Anaya. My whole life revolves around Anaya at the moment. I am unable to see past the present into the future. I am unable to decide now what I will do after she is gone, for indeed it continues to seem that she is slipping quietly away from us.

The thought of missing her breaks my heart. For I already miss her voice, her smiles, her funny laugh and looking into her eyes and having her really see me. What will I do when I no longer have her baby cheeks to kiss? How will my life continue with the center of it missing?

Today I have kissed each finger and each toe in turn, attempting the memorize the wonder of it, the feeling of having my heart overflowing with love, and with gratitude for the gift of her presence in my life. I am reminded of how much love she has brought to me. How she has answered my prayers in so many ways. She has brought to me a family of community, a family of friends, hearts open wide and honest. We are loved and we are taken care of. We have a safety net of love supporting us and when we fall I know it will be there to catch us. I fear the vastness of my grief and I only hope that my fears are worse than the actuality of it.

"Believe in the Miracle" I've been told recently. I do believe in miracles. I hope for one everyday. It seems that the real miracle here is in what she has brought, and how she has connected so many of us in love and compassion.

Thursday July 8, 2010

Anaya had a fantastic day. Penny came by and took care of her so that I could clean the house up for my family visit. I got the dishes, vacuuming and laundry done! Seems like an achievement in my world. My close friend Grant is visiting from Calgary and my father and brother are going to be here as well.

Anaya had her second dip in the pond today. Shelann and her boys and Amy's kids all came over for a swim in the pond. We had a sunny, beautiful afternoon. I think perhaps Anaya is becoming used to cool water. I got it on video again. It's soo cute. She didn't need to be suctioned at all today. I'm so glad. I hate making her gag.

Anaya has been seeing chiropractor Remi Champagne and she seems to have more mobility in her neck. I pray the things we do to help her benefit her in some way. She is my little love and I would give anything to make her better, or relieve her discomfort. The chiropractic seems to help as much as seeing the healer at Coyote Springs. I continue to give her homeopathic remedies to try to increase her comfort and maintain her health.

we're not certain but we (nurse and I) think she might be having seizure episodes. Remember a week and a half ago when I thought she might be dying? That may have been a seizure.

Not such a pleasant thought on such a lovely day.

Solara is looking forward to visiting relatives in Calgary and will be gone for most of July. I hope my little girl will have amazing growth experiences, though I will miss her dreadfully.

I'm always striving to maintain Presence and I hope with all my heart that I'm doing right by my babies.

Tuesday June 6, 2010

This is a picture from yesterday of Joanne using the nebulizer to help Anaya manage her secretions. Anaya is doing alright the last couple days.

We just returned from a family walk down to the general store. It is such a beautiful evening. Nice and warm with a light breeze. Solara found a snake on the road and we helped it get off the road and into the ditch. Hopefully it will stay off and continue to slither another day.

I love all the purple and white flowers growing in the ditch. I love Procter. I love Kootenay Lake. I love seeing all the beauty around me. Anaya enjoys going for walks. She really seems to relax and take it all in. We usually take her for at least one walk a day. I'm tired now and my creative energy is ebbing. Tomorrow I am meeting with Lisa and Rosalyn to plan a group tea for the moms that help feed Anaya with their milk.

Anaya pre-Krabbe Video

Before Anaya became ill she would smile and coo. She could see and she could move. She used to copy the funny sounds I made. This video is our only video of Anaya when she was healthy. It is a very special moment to me. I have decided to share it with you.

She's so cute and vibrant.

Saturday July 3, 2010

The past few days have been filled with the task of managing Anaya's secretions. She's either been too wet or too dry in her throat. We spend quite a bit of time with the nebulizer and the suction machine.

The stress of it has me emotional and I'm producing less milk today than usual. We still get milk donations from nursing moms in Nelson and we sure use them! Anaya is fed with so much love. Last night I came up with a strategy to make the feeding pump work. The sensor hasn't been detecting the breastmilk in the tube because it is translucent. I colored the outside of the tube with a marker and fooled the sensor. Anaya got full feeds last night.

She is so gurgly this morning. It's like her medicine isn't working. I'd better go suction her again.

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.

Anaya's First dip

http://www.youtube.com/watch?v=h5ukT5mJhc4

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.

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

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

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.

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

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

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

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

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

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.

May 28, 2010

I am submitting this article to local papers today.

Fundraiser supports testing, disease treatable
By Camara Cassin

Baby Anaya Cassin-Potts, first written about in March, has now been given a diagnosis of Infantile Krabbe Leukodystrophy. This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy.
The outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and life expectancy is less than 2 years.
The saddest part about this disease is that once symptoms are present it is untreatable. Krabbe can be tested for at birth and treated with an umbilical cord blood transfusion that contains the healthy stem cells of another baby. These stem cells make their way to the brain and produce the enzyme that is required. Children who receive this treatment continue to develop and have a much higher quality of life and a longer life expectancy.
British Columbia does not test babies for Krabbe Leukodystrophy at birth. In some states in the USA testing for Krabbe is routine. Anaya’s parents are working to put together a fund for Nelson parents at the Kootenay Lake Hospital who would like to have their newborn screened for this disease with a simple heel poke. Each test must be sent to a special lab and paid for independently. To accomplish this they are holding a Gala Dinner and Dance Fundraiser at the Prestige Inn on June 11, 2010. Proceeds will also go to the Hunters Hope Foundation which conducts research, and to the family to help with expenses. Tickets are available at the Prestige or by calling 250-505-0275.

.

Baby Baby Mine

Baby, baby mine
who's only here for a time
I've been waiting
for someone like you

needed a teacher
to show me the truth
and I've found her
in the mirror that is you.

Baby, baby mine
you're like the stars that shine
so beautiful,
and so far away

the sun is shining
shining down on you
and baby, baby mine
this love's what's true

And when the night gets cold,
and the darkness is too thick
I will surround you with my love
and bring you light

and when you're on your own
know you are here inside my heart
I will bear you up with love
into the light

baby, baby mine
only here for a time

I can't go on, I'll go on

I had an anxiety attack yesterday.

It started at a cafe where I was waiting with Anaya for Brent to finish an appointment. It happened that I sat next to a girl I know who has lost her children to the ministry because of her lifestyle choices. I try to practice compassion and non-judgement but I couldn't help getting angry. Angry with God, angry with her, angry with the world. I wanted to scream out loud how unfair it is that MY baby, who was so wanted and so well taken care of, is fading away. How lucky this woman is, to have healthy babies, and it seems she doesn't care enough to be there for them.

While these thoughts were going through my head Anaya started crying, then she started choking. Everyone in the cafe was looking in our direction. I helped Anaya through her spell and got up, paid the bill and left.

I felt an incredible sadness descend upon me. It settled about my shoulders and my heart like a cold fog. I shivered and tears spilled from my eyes and ran down my cheeks, falling on her golden head like raindrops. Wrapping my arms about my little love, we continued on down the street. I wished we had known when she was born that she was sick. She looked so perfect. There was no reason to suspect. Our moments turned into minutes, days, months, and now we are 8 months past the time when a stem cell transplant would have saved my daughters life. Would she have crawled by now? Would her little giggle resound through the house? Would her first word be Mama?

We could have found out with a simple blood test. We are want to provide the means for future parents to get this test if they want it at the nelson hospital. It's the same heel prick that they do for the usual newborn tests. We could have helped her but now it's too late for that treatment.

The tears kept falling, the anger building into frustration, my sobs bubbled out of my chest like unwilling prisoners. I felt nauseated and trapped, wanting to run, to scream and kick, wanting to fly out of my body. I wanted a healthy baby.

I met up with Brent and we went to the pharmacy to get Anaya's meds. I sat down on a chair and buried my face in her golden hair. She slept peacefully, my heart hammered against my chest and I wondered if I was going to have a heart attack. The anxiety of all my fears and grief and anger gripped me and I wondered if it would kill me. That made me laugh at my own thoughts. How ridiculous! I realized I was having an anxiety attack and forced myself to slouch into the chair and focus on cuddling the baby. I felt her breathing, her warm, trusting little beingness. I felt my own breath and slowed it down to match hers, I felt my body in the chair. I felt the air moving through my nostrils.

I began to feel my love for her radiating towards me, mirrored in the eyes of the people watching me cuddle the baby. A warmness embraced me and my heart slowed, the nausea faded and the anger disappeared. I realized that I will go on giving her more. All of me cares, all of me finds joy in her. I would not trade this journey for another. She's a keeper, if only I could keep her.

The impermanence of all life is what makes it beautiful and wondrous. Even when I can't go on, I'll go on.

Wednesday May 19, 2010

Brent and I just finished changing Anaya's feeding tube. It was not a pleasant experience. It must be incredibly uncomfortable. But now it's done. It is placed properly through her nose into the stomach and is taped neatly on her cheek. I hope she can forgive me these pains and discomforts that I cause in my efforts to care for her.

Solara helped to feed Anaya yesterday. She is an awesome big sister in this situation.

I'm exhausted this evening and I think I'm going to finish up feeding the baby and head to bed early.

Monday May 17, 2010

Anaya spent the day with her Nurse, Joanne, today. It is the first time I have gone to town without her. I needed to pick up a prescription, some diapers and breast milk. On the way I stopped and had lunch with Anaya's dad, Brent. It was like a first date. We are hardly ever alone together. It felt new and weird to be without our "little bird".

I had time today to think about what I may do with myself in the future. I think we may foster children that have special needs, or that are sick with degenerative diseases. I have been learning so much about caring for a special child, both physically and emotionally. I feel as though it is incredibly important that these children get the love and care they need. I think I'd be good at that. Anaya is training me well.


Upon returning home I was informed that Anaya had an excellent day. She was not too upset to stay with Joanne, which is a new thing. We have a new medicine called scopalomine, which helps to dry up her mucous. It really seems to work, although it sedates her slightly. It's so nice to not have to suction her so often. She really dislikes it. It makes her choke and gag and turn bluish. It's awful.

I've been talking to Autumn and Tom today, who are coordinating the next fundraiser on June 11. There has been interest in knowing more about Anaya's disease and the Hunters Hope Krabbe Leukodystrophy Foundation that we are contributing to. Please check out their website at www.huntershope.org

Here is an excerpt from their site.

"KRABBE DISEASE

Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems.

Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire.

When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.

Krabbe Disease has four phenotypes: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid and death occurs in early childhood in the infantile types.

One in 100,000 live births in North America are afflicted with Krabbe Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. Yet, awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.

Now, a new and revolutionary treatment, Cord Blood Transplant is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders."

The babies must be tested for the disease at birth and treated right away. It is too late for Anaya to have this treatment. We hope to set up a fund for Nelson parents who wish to have their baby tested for this disease as it is not currently done here.

Saturday May 15, 2010

We are at the airport waiting to board. I just walked through the airport carting two bags, Anaya and the car seat. Although it was incredibly difficult I feel very proud of myself. I made it to the gate. :)

I am happy to be going home. I miss my family and friends. I miss having Nurse Joanne around to help with Anayas needs. Being away from home sure reminds you what is important to you. I love Brent and Solara and our dogs and our garden and going to the bakery on Saturdays. The list of ands goes on.

I feel so very blessed for the love and support in my life, in my family's life. Without those of you who love us and support us we would be floundering in a hopeless sea of grief and despair. You all help me keep my wits when the world has turned upside down. Thank you again.

I also feel blessed for having had the life journeys that I have experienced. Having Solara as a daughter taught me how deeply I could love having Anaya showed me how much more emotion my heart can hold and the variance of it. Very intense.

Boarding now!

Thursday May 13, 2010

Anaya and I get to go home on Saturday! I'm excited to return to the green flowering spring. It is so dismal here, brown and leafless. Back home where I don't have to talk about death anymore. Where we can live in the present and enjoy Anayas life and the sunshine. I still pray for a miracle. I still believe she can heal if that is what is meant to be. It is her destiny to simply be herself and live however long she does.

Thursday May 13, 2010

Well it looks as though there will be no G tube surgery. We are at the Alberta Children's hospital. The Docs say that they believe Anaya is too weak to undergo the procedure. They say it's likely that if they breathe for her during the surgery they will have to use the machine to breathe for her for the rest of her life. They say her body will forget how to breathe. Then she would be in the ICU until she died.

So we are not going to do it. I think dying in the ICU would suck. Home would be much better. Hopefully that is still a ways away.

The docs are convinced the next stage of the disease will be seizures. They've been teaching me how to recognize a seizure and what to do. I find the thought of watching Anaya struggle with seizures extremely upsetting. I pray with all my heart that she will be spared that.

We talked about end of life care and medicines to make her comfortable. Apparently morphine is good for that. They say you can suffocate to death comfortably while high on morphine. Who knew. It decreases the awareness of respiratory distress.

Quite a dark day. I can't wait to go home.

Tuesday May 11, 2010

Mothers day turned out to be a surprise. Brent got the day off at the last minute. I was glad to have him here. My family gave me an old potting wheel. I'm excited to learn how to use it. It was lovely to spend the morning with my family. In the afternoon Penny took me to the driving range for my first golf experience. I had fun.

Today we fly out. I'm a bit intimidated by all my baggage but I'll live through it.

Anaya is doing well today. Not too phlemmy, very restful and cuddly.

Friday May 7, 2010

My daughters seem to both be sick today. Anaya is her usual phlemmy self and Solara says she has a headache and feels "about to throw up".

Anaya fell asleep early and I lay her in the bed for Brent to watch her. I then took my homeopathic first aid kit and some melatonin and went into Solara's room. Having already gotten three big glasses of water into her and dinner, I knew that perhaps rest would be the next best thing for her.

Exhausted and nauseated, my little girl cried fat little tears as I tucked her into her bed. I gave her a dropperful of the liquid melatonin and consulted the "Homeopathic Remedies" book for what I should do for her nausea. After some reading I gave her a pellet of Nux and a pellet of tabaccum. She asked me what it was. I said "Very small medicine sweets, hold them under your tongue." She did as I asked and lay back against the pillow.

I rummaged through her bookshelf, realizing with sudden clarity that I hadn't gotten Solara any new books for quite some time. I am not reading to her often enough. I thought to myself. Oh no! There's nothing on this shelf I haven't read to her a thousand times! But just then I saw the spine of a little brown book peeking out from between the rest.

"The Velveteen Rabbit" By Margery Williams. Ah ha! I thought and pulled it out. I haven't read this one since I was a little kid. I turned back towards the bed.

I pulled the covers up over my bigger baby girl and sat down on the edge of the bed. I began turning the pages, keeping my voice soft and sweet, lulling her to sleep within the first few words. But I couldn't stop reading. About halfway through the book I realized that with Solara sound asleep I could read in mind, and I closed my mouth and finished the book.

Believe it or not there are beautiful pearls of wisdom in "The Velveteen Rabbit". I'd like to share my favorite pearl with you. It is a conversation between the Rabbit and the Skin horse one day in the nursery.

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

I finished the book, closed it's pages and crept from the room.

Thursday May 6, 2010

Have you ever seen the movie "The Matrix?" Do you remember this line? "Do you ever have that feeling where your not quite sure if you're awake or if you're dreaming?"

There are times lately where I wonder if I'm stuck in a dream. Is this horrible disease really stealing away my baby? Wasn't she perfect just a short time ago? How did this happen so quickly? Where did that perfect future go? The truth is I grieve things that haven't happened yet that will never happen. I already miss the sound of her little baby feet running across the floor. Or the giggle that would have come from tickling her little sides, watching her pick her first flower, seeing her delight in the fuzziness of our dog, eating her first birthday cake with her hands and sucking the remnants from her fingers. I wanted to hear "Mommy, I love You" and though I know she does, I still miss it's loss! How crazy is that? Missing something from an uncertain future.

I've been a bit off today. I'm overwhelmed and sad. Anaya has regressed so far. Her actions are less mobile than those of a newborn. In addition Anaya has been extra phlemmy. Suctioning her throat out scares her and it hurts my heart to have to do it. The main cause of death in kids with her condition is pnemonia. We're told it's really only a matter of time before pnemonia will come and take our baby away. Oh God, perish the thought. My little love, I pray you will heal or go peacefully and without suffering.

Anaya's Do Not Resusitate order came in the mail today. It means she's allowed to die peacefully and without intervention should the time come. We don't want to subject her to the trauma of life support machines. When it's her time, we will hold her gently and kiss her and try to be brave. Her bright soul deserves a better body. I believe she'll have one someday.

These sadder thoughts sneak in to our lives - we are only human. People think I'm strong and doing such an amazing job with my daughters - but I feel so weak. Nothing I've done has slowed the progression of the disease. I don't even know if she can see me anymore. Her cooing is gone, her smile is gone, sometimes I wonder if she's in there. Through it all I hold her close, snuggled up to my chest where it is warm she seems most content. She still knows me. She must be in there.

I'm not always strong, I'm not always sane. Today I shouted at my partner for no good reason, insisting that mowing the lawn was terribly important. I feel so helpless in my environment. I wish I could go out and mow the darn grass! This helplessness discourages me. I feel the need to accomplish things, to see positive change.

I can't have a going away BBQ on Sunday. My house and yard are not fit for any kind of event at the moment and there is nothing I can do about it. Oh the silliness of my embarrasment over this, I know - but it's there. I can't pull it off so I have cancelled it. I apologize - I was so looking forward to it. Mothers day has never had so much meaning to me, or so much emotion as it does now. I am a motherless daughter mothering my dying daughter. I think it's brutal that Brent couldn't get the day off work to be with us on what could be Anaya's only mothers day.

On top of all of this I'm terrified about going to Calgary Children's and hearing big dark pronouncements about my daughter said in monotone in the bad news room.

I know my fears are only thoughts, but my emotions are valid and I am going to let them sit here with me for a time. Then I will let them settle away overnight, hoping that tomorrows dawn will bring a sunny day and a bright new attitude in my head and love shining in my heart.

May 4, 2010

Brent's mother Marlene is here to visit for the next week. She arrived today just before dinner. It's nice because she's going to fly back to Calgary with Anaya and I when we go to the hospital on the 11th. It will be less intimidating to go together then it would be for me to go with Anaya by myself.

Today Anaya was phlemmy. We had to suction her a few times. Then I remembered to give her the homeopathic remedy that I bought for this purpose. The homeopathic drops of Silicea and Stramonium really seemed to help. Joanne and I also gave her some melatonin before her morning nap, as an experiment to see if it would help her sleep deeply enough for Joanne to hold her, or for me to set her down. The combination worked like a charm. We were able to set her in the stroller and go for a walk without too much of a mucous issue, and she slept for quite a while before awakening. The other day Anaya had a homeopathic consultation with a local lady named Margo, who is going to do some research to find a more specific remedy to help Anaya with her condition.

On our walk we picked ditch growing daffodils to put on the table at dinner. The sunny yellow beauty of daffodils brightens my day. I love their "Honky" looking faces :)

It looks like Brent has to work at Hellman on Sunday the 9th, which means it'll be us girls for our mothers day/ Anaya's going away BBQ. He said he can't get out of it. I feel sad about it but I suppose I'll just have to deal with it. It will be so nice to have friends and family over for Anaya's BBQ. Neighbors and friends are welcome to attend. Drop me a line at my email. maraglow @ gmail.com and I'll give you the address. It will be an afternoon event. I hope it will be sunny and we will hang out in the yard, watch the kids play, eat some food and chat while listening to summery music that will float from the outside speakers. I hope to see you there.

May 2, 2010

The last post was not intended to raise such negative emotion. I should have relayed a more positive story. I have many more positive experiences than negative ones :)

This weekend has been wonderful and tiring. Anaya's grandparents visited, Solara had a sleepover, we got some onions and sunflowers planted, we attended Meeri's BBQ in Nelson and Anaya did well through all of it.

I feel a bit anxious about taking Anaya to Calgary for the G- tube surgery. I pray that she'll come through it all with flying colors and come home with me. My fears are the opposite.

My fears try to carry me away from the present into the past and the future. My friend Penny helps keep me grounded in the here and now. She tells me my negative thoughts are just thoughts, and that I am much more than the sum of my thoughts. It helps to vent it out and let it go. Nurse Joanne is also an incredibly grounded presence.

We are focusing on the here and now. Each breath, each cheek to cheek - every special minute - that is where I've been. I apologize for not blogging as often but I promise to share any pearls of wisdom I may find along the way :)

Thursday April 29, 2010

Anaya is doing well today. She had a visit with Grandma and Grandpa Cassin - both of whom took turns holding her. I was quite proud of Grandma Karma - she held Anaya in such a way that she didn't cry for quite a while. It was really nice to see my parents. They live in Alberta and are really busy so they don't get to visit much.

There are so many things that I have become used to as being part of life with Anaya. For instance - she sleeps with her eyes open, I feed her every three hours through her tube, that sound she makes on the in breath is her crying, if she chokes you have to flip her upside down and pat her back and then wipe the mucous out of her mouth with a cloth etc. These are not normal things in most people's lives. This is part of life with Anaya though, and for me they have become routine.

I've certainly gotten some funny looks from people over the past few months when we go out in public. The worst incident was in New Denver on the way back from seeing Margaret Ann at Halcyon. It happened like this:

It was the crack of dawn on a crisp spring morning. The cabin we overnighted in had no power or running water. We dressed, payed our bill, packed up the baby and our belongings and hit the road. I fed the baby as we drove, a mixture of breast milk and the goats milk that had been recommended for Anaya due to her formula intolerance. After an hour of driving we arrived in New Denver and decided we needed some coffee and some breakfast.

We pulled over to a cute little white building which advertised hand painted clothing, cappucino and sandwhiches. The inside was clean and sparsly decorated with womens golf shirts that had handpainted flowers on them. Tacky if you ask me. Something an 80 year old woman would wear on a hot summer day.

The sandwhiches looked inviting and the smell of coffee held my attention. Standing with the baby in my arms I held her carefully to avoid pulling at the dressing that holds her feeding tube in her nose. The middle age woman with medium length brown hair behind the counter asked us what we'd like. I took her to be the owner of the place as you wouldn't often find a woman of her stature making coffee and sandwhiches. I ordered a mocha and a ham and swiss sandwhich. The sandwhich, being pre-made was ready instantly and I sat down at a nearby table to wolf it down.

I shifted Anaya into the crook of my arm and dove into my sandwhich. A few bites in Anaya started gagging and choking, convulsing slightly inwards over her stomach. She began vomiting and I held her towards the edge of my seat, so that the vomit would hit the floor and not my only set of clothes.

The owner lady behind the counter exclaims "Oh my God that is soooo Gross!"
Anaya heaves a few more times and I reply "I'm sorry, she's sick" and I proceed to wipe up her face with a napkin.

I raise my eyes to speak to the woman "Do you have anything that we can clean this up with? How about a cloth?"

She glares at me and says in an ice cold voice "I'll mop it with bleach when you leave."

Part of me wanted to explain to the woman that Anaya is not contagious, that she's having a reaction to the goats milk, that she's got a brain disease, that we're trying everything to save her life and that a little vomit is no big issue. The other part wanted to jump over the counter and throttle her for being such an insensitive snotty bitch. Fortunately my good sense took over (Brent led me away by the arm) and I said nothing except "Have a nice day."

Photo Entry

Saturday April 24, 2010

I love my daughter as a part of myself. I feel each breath she takes, I feel her anxieties and her delights. I know her heart, her body, her soul. She grew inside me. If I have any power to help her heal it is in the space between thoughts where God resides.

In my quest to find healing for Anaya I have learned many things. My newest lesson is that I must quiet my mind and let go of trying to maintain life as usual. Each moment spent with her is a precious gift that will never be repeated. Everytime she calls out for me I feel her longing for the comforting warmth and security of her mother. When I take her in my arms she knows me. Her breathing calms, her small body settles softly against mine. The smell of her baby soft skin fills my nose and I hold her to my heart where she falls asleep. Resting my lips on her head I pray "Please, God, heal my baby", feeling her fine golden hair floating on the air of my breath.

Every part of life is so much more beautiful from the perspective of profound emotion. Each living thing a marvel, each person a deep wellsping of personal experiences and dreams. The mountains, the forest, the sun and rain - each spring flower bursting forth with magnificent life - there is abundant beauty all around us. I see it mostly in her. This lovely little being that has shared my heartbeat since the moment she was concieved in Love. Her skin shines with rainbow radiance in the sunlight, her dark golden hair shines with hints of red. Her eyes are a perfect blend of both of us. Hazel green and brown from me- with a yellow ring around the pupils from her father.

It has occurred to me that in these moments there is a magical oneness that settles over my heart and fills me with joy. In these moments there is healing to be found.

Therfore I resolve to change my day to day to one moment to the next. Less trips to town, less doctors appointments, less TV, less devoting my attention to e-mail or facebook. I resolve to blog at the end of the day and to save computer time for that moment. I resolve to knit our family into a healthy wholeness by giving each other more of our life-giving attention. Our lives are no longer taken for granted.

I resolve to look within from a place of Presence. Inside of the self is where many have found answers to their questions. Perhaps I shall find the answers to mine.

Friday April 23, 2010

Anaya has been doing very well this week. She actually seems to be following more with her eyes and has been moving her head from side to side. It was so cute this morning, she lay on the pillow turning to face Daddy and then Mama, reaching up with her little fists in a stretching motion. For a few moments she really seemed to make eye contact with me.

It is a busy time of year. I've been taking the baby out for more walks and spending time with her in the sun in the yard. Excuse me for not blogging as often - it's just that we've been keeping busy and enjoying the fresh air. Anaya is more calm in the warm sun. Her little cheeks have taken on a tanned glow and her hair sparkles in the sunshine. She's such a little beauty. I know I'm biased because I'm her mommy but she's the sweetest little peach I've ever seen.

I'm planning a BBQ (open invite potluck) for Sunday May 9 starting at noon at our house. More details here and I hope to see all of you there to see Anaya before we go to the hospital on May 11 for an evaluation and maybe a g tube surgery. That means putting a line in to her stomach that doesn't have to go up her nose. There is risk involved because they will have to put her to sleep to do it. We will be in Calgary for a week - Anaya and I.

Must get ready for the day now. It looks to be beautiful outside. :)

Wiggle the Birdee Video

This video was taken a few days back. It shows some physio playtime with Anaya's physiotherapist Maria Morley. She's a gem of a lady and Anaya really enjoyed this session. Wiggle the Birdee is Anaya's favorite game right now.

Tuesday April 20, 2010

The trip to Halcyon was both incredible and exhausting. Margaret Ann worked on Anaya's spinal alignment and meridian points for hours. It's amazing to watch. She puts her fingers on Anaya's little bones and applies the faintest touch and waits for the bone, or vertebra, to move back into alignment. When it does you can feel a little pop resound through her chest cavity (when a rib was out of place) and she'll breathe a deep sigh of relief. This time Anaya slept through most of the session. The nature of the work does not require her to be awake.

After her long bodywork session we took Anaya into the natural lithium hotspring pool. Margaret Ann designed it to be chemical free - with continual spring water flow through. It was pretty hot so I just dunked her body in a few times and let her cool down between dunks. She really seemed to like it. When we got out we sat in the sun to dry off. It was gorgeous out. The way the sun beats off the cliff it makes it warm enough to sunbathe in April. I had to make sure the baby didn't burn.

Anaya liked the sun on her skin. She liked watching the reflection of the water on the wall as the sunlight danced patterns in her visual field. It was a beautiful moment.

Time passed quickly and before I knew it we were back in the Van driving home. It seemed to take forever and when we arrived it was bedtime. The next morning Anaya seemed pretty bright eyed and calm. We love mornings lately. Mornings are the time when Anaya is most aware, most happy, and her eyes seem to smile at us.

This morning my elder daughter Solara said "I wish Anaya would smile at me like she used to..." it wrenched my heart. I told Solara that there's a chance Anaya might have a short life. She nodded as though she knew this already and shed a little tear. She's a pretty resilient little girl though, and after a moment she moved on to asking if she could have friends over after school. I'm glad that she is able to maintain normalcy.

I've been quite sad the last few days as it seems as though Anaya hasn't had any major healing breakthroughs lately. I miss her the way she used to be - but I know that the past is the past and I need to be here in the present. She's still with us. She still loves to cuddle and snuggle her mama. I'm here to give her all the love and comfort that I can.

Other mama's are still helping to feed our little Angel and I just want to tell you how much we love you Nursing Mama's! Thank you for your continuous support. Anaya needs you too. My milk supply hovers between 6 - 8 oz a day. I can't seem to produce more with the pump and I've been getting headaches from taking drugs to increase my supply. I'm going to see Mark Trione to see if he can make my headache go away. He does massage and cranial sacral work and lives nearby in Harrop. I highly recommend him. I always feel less stressed after seeing him.

Nurse Joanne started work yesterday and it sure is nice having help! Anaya is slowly getting more used to her and I hope that one day she will rest comfortably in her arms. It is beautiful outside. I wish I could put this little peach down and go fix up some flower beds but it will have to wait for another day.

Sunday April 18, 2010

Today we are taking a family trip up to Halcyon Hotsprings to see the Healer named Margaret Ann who does mixed modalities work. She combines Reflexology, Cranialsacral therapy, acupressure and touch for health. Last time Anaya saw her it really improved her condition. Lets hope the same happens this time!

It's a three hour drive and I'm trying to get up the energy to see it as a fun thing.

I'll let you know how it goes.

Note

I have not given up. Sometimes I get saddened and I grieve. It's natural, it is it's own form of healing. I still pray every day and give Anaya all the healing love that I have. I still believe she can heal. Someone said my last entry sounded like I've given up...that is not the case. I just understand that her destiny is her own and her life-time is between her and the great spirit, God - if you wish to name it.

Thursday April 15, 2010

Her smile, once so radiant and sweet - seems to have left for heaven already. Her eyes, once so focused and aware, seem to no longer see me. I treasure the memories of her soul looking into mine and smiling. I miss it and I grieve it's loss. She has blossomed quickly in this life and seems to be fading away. Each sunrise brings us the special gift of her presence. Each day brings more love than the day before. The heartache brings me closer to myself, and to Anaya. The rest of my life will be richer and more vibrant for having known her, for having been blessed with her choice to be my child.

Here are some more of her smiles I would like to share with you.

Wednesday April 14, 2010

I am pleased to tell you that Anaya appears to be over her cold! I'm also pleased to tell you that we're in the process of hiring an awesome nurse. Many people I know have known her for years. Her name is Joanne Emily. She has been a nurse for 40 years. She has worked with Pediatrics and infant development and palliative care. She is deep and caring and fun with a sparkle in her eyes. I feel very comfortable with her.

This afternoon Anaya and Solara and I went for a walk with our huge puppy Alexander. The sun was shining, the birds were chirping, the dog was happy, Solara was cruising on her scooter - all was lovely. I contemplated life and death and God and Energy and the universe and all of creation. I thought of the joy my daughters give me and I felt it - glowing through my being as we moved down the country road together towards our neighbors house. I also felt the tangy sweet sadness of time passing away from us.

The docs have said that my little love is in the advanced stages of this disease. I'll just keep praying and loving. I'm learning so much about life through all this. I am changing inside. I have never known such depth of emotion - such joy, such sorrow. Even losing my mother does not compare. I feel like a willow in the wind- bending and swaying but never breaking, somehow never breaking. I do not know where this strength is coming from. Perhaps from my previous life experiences. There have been some struggles along the way that I have come out on top of. My life has prepared me for this.

The beauty of the rental property we live in blows me away. There are numerous perennial flower beds and a large veggie garden, and also a large lawn. We took it on last year when we were pregnant. Of course we had no idea that our baby would have such special needs. I could really use a hand with spring garden prep and bed clean-up. It stresses me to see these things undone and not being able to do them myself. Perhaps I should throw a spring work party potluck. Anyone want to come out? Send me an e-mail. maraglow@gmail.com

Sunday April 11, 2010

Anaya's been struggling with this respiratory infection all week. It has been incredibly draining as she needs even more care than usual. It has been difficult to find time to blog but I wanted to update you on her condition.

We have her on clindamycin, an antibiotic, because her cold seems to have moved into her lungs. She's also getting ventolin to help her bronchi dialate in her lungs. I can't wait for this sickness to go away. Her condition is already enough of a challenge by itself- respiratory problems really make it even more of a challenge.

This week I have learned 2 things. 1)How to insert a feeding tube and 2) How to suction mucus out of a baby's throat. I have now done both... I feel less helpless with this knowledge. I am able to help her - whether or not a nurse is here.

Since our Procter hall event we have had friends and neighbors helping us by bringing dinner for our family every day. This is especially awesome on the days that Brent is working. My stress level is incredibly reduced by this. We are so grateful and we want to express our gratitude. Thank You so much!

Anaya is still very aware of her surroundings and appears to know my scent. I left her with Penny and Veronica for a few hours and they used clothing with my scent to calm her. I'm glad that it worked.

Thursday April 8, 2010

Yesterday Anaya woke up, fastened her big wide hazel eyes on mine and smiled. It was a small smile, the kind where the corners of the lips and eyes turn up. It was the first time she has been able to smile at me in more than a month. My own face lit up in a giant grin and I laughed in delight, tears of joy in my eyes.

I have said before that I will know when Anaya is healing by how often she smiles. Perhaps this is the first of many. Perhaps the qigong and our prayers are helping her. She is certainly drinking in her surroundings with her eyes. She has been moving her hands to her face and even clutching objects. Yesterday I looked down and she was holding the tie to my hoodie in her fat little fingers. She stared at it with an intensity similar to a man watching a hockey game on TV. She gave it a tug and blinked, then looked up at me. Penny saw us and smiled. We own these small victories.

I took a video of yesterdays physio session. Anaya was shaking her foot rattle with vigour. I will try to upload it to the blog today.

Nurse Veronica will be coming here for 6 hours Tuesday to Friday. I hope that Anaya will learn to quiet down for her. I could really use a few hours of baby free time. It will be time to start prepping the garden, to get manure, to weed and trim and rake. Time to organize and spring clean. Time to go riding with Amy for an hour or so. Time to walk my dog. Never enough time is there? Anaya deserves most of it. I do need to get some to myself though.

Well, this beautiful little monkey is telling me she is hungry. I'd best deliver! Ciao.

Tuesday April 6, 2010

We have returned home from the hospital. Anaya is still recovering from her cold. She lost her voice a few days ago. When she opens her mouth to cry and scream - no sound comes out. It's is kind of nice. I can hand her to someone to hold her and not have to listen to her complaining about it! I do hope she recovers soon. Her coughing is not fun to watch.

A big thank you to the nurses at Nelson Hospital for treating us so well and making fresh OSO coffee! Huge thank yous to the moms who brought milk and food. Love!

Nurse Veronica is supposed to be coming today to help with Anaya. I also put an ad on I love nelson.com looking for another nurse. I hope to de-clutter some of my house today as things have been accumulating for more than a month. I will also start calling people to give them a personal thank you for contributing to Anaya's Procter fundraiser. (At least this is the plan)

I have found a foundation that provides information for families of children with Krabbe Leukodystrophy. It is called the Hunters Hope Foundation. They are searching for a cure and helping families with emotional/social support. It is based in new york state. http://www.huntershope.org

When we have our next fundraiser we will be sharing the proceeds with the foundation to help other families and to help find a cure. We need the funds so that I can continue to stay home with Anaya when my maternity benefits end. I'm the only person she settles for currently and she needs me by her side. The Prestige Inn has offered their ballroom on June 11. That's not a lot of time to prepare but I have faith that it will work out. The event will be more formal, with a gourmet dinner, guest speakers and silent auction. Anyone who'd like to help out with the event in anyway please e-mail healinganaya@gmail.com or call Tom at 250-505-0275.

On a completely different note:

Master Ming continues to do high level medical qigong with Anaya and he asks that all other energy workers hold off during the next 2 weeks. Thank you for your help. He is very specifically working on a genetic level to get her body to produce galactocerebrisidase. He has previously facilitated the miraculous healings of several other people - some of whom I have met. I pray that the higher power in the universe will help him and make it so.

Anaya nursed twice yesterday and also brought her hands to her mouth. These are great signs! Let's keep the hope alive and enjoy every moment.

Saturday April 2, 2010

The name of the leukodystrophy is Krabbe syndrome. I felt very devastated when we found out. The prognosis is death before the age of two.

It has taken me a few days to restore my faith. Despair, sadness and grief seized me in their tenacious grasp and I fight to be free of them. I'm not certain why the opinion of this doctor was able to shake my beliefs- perhaps it is just my fear of failing my baby- of failing to succeed at healing Anaya.

Since then I have had several realizations:
1) I do not have any control over the destinies of others
2) miracles have happened all over the world which are unexplainable
3) death comes for all of us when it is time and our purpose is fufilled
4) my fear of death is actually my fear of failing at something that I have absolutely no control over.
5) I believe in the miracle of creation and a higher power.
6) having faced these realizations I have mastered my fear and can move forward with love and faith and pray that Anaya will be a miracle baby.

I do not yet know how to approach this topic with Solara, although in retrospect, perhaps I shall relay to her a version of what I've just said. It may be a few days before we get out of the hospital and I get a chance to talk to her. I hope to inspire love and not fear in her heart.

Although this news is emotional I ask you- do not despair! Anaya has been doing alright and continues to need your love and prayers. She is my little love and on her behalf I say rejoice in the moment of now. See the beauty in the little things, never give up, and confront your own feelings about death so that you can enjoy life even more.

I still believe she can heal.

Good friday

Anaya and I are in the Nelson hospital until she recovers from an upper respiratory infection. It could just be a cold but she's having a hard time dealing with the phlem. Any of Anaya's nursing moms who can bring fresh breastmilk to the hospital will be welcomed. There is also a super-duty pump here, if you'd like to visit and pump. Call me at 250-509-0593 to let me know you are coming. Room 201. Brent's at work today. Solara is with her dad, Kristian.


Last night I had the best sleep I've had in weeks. The nurses took turns holding and rocking Anaya. I got to sleep by myself! Sure it was a bit lonely but wow! What a wonderful refreshing experience. I feel years younger!

Anaya is doing a bit better today than yesterday. She pretty much slept all day yesterday and wouldn't open her eyes and make eye contact. She was having a hell of a time breathing through the mucus. I attribute her improvement today to Master Ming, Micheal Smith, and Ali Watt, all of whom came to the hospital last night to share their gifts with Anaya. Ming did qigong, Micheal showed me some acupressure points to open up her lungs, and Ali brought homeopathics (belladonna for fever and pulsatilla for mucus). Her improvement is drastic. She's bright eyed and coughing with more energy. She knows me.

We were given a diagnosis by phone. Anaya is said to be suffering from a leukodystrophy that results from the lack of an enzyme know as galactocerebridase which is necessary for myelin growth.

Thursday April 1, 2010

Anaya has come down with something. Maybe it's a cold but she's having a really hard time. I'm taking her to the Nelson hospital to see Dr. Fitzimmons. We'll probably be admitted. It might be a few days before I can blog.