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.