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.

Tuesday March 30,2010

There is always so much to say and never enough time to write it. Did you know I'm typing with one hand right now? I sometimes feel like I'm learning to type all over again.

Today was Brent's first day of work. It was my first day at home with the baby "by myself" - only I wasn't by myself at all. Penny drove Anaya and I to town to Anaya's Cranial Sacral Appt with Laurie and after that we had to stop by the hospital because Anaya literally sneezed the feeding tube right out of her nose! Dr. Fitzimmons helped to put a new tube in and away we went. Anaya was tube-free for 3 hours or so. I'm sure it must have felt nice.

Anaya has been comfort nursing a little bit everyday now. She did choke a wee bit at one point today but she was ok. She likes to suckle and almost always falls asleep within 5 minutes of nursing.

The feeling of a babe at the breast is one of comfort and warm fuzzies. Imagine your favorite teddy bear hugging you back as a child. I'm not certain if that's a good comparison for everyone but I really loved my teddy bear. Feeding a baby from your body is amazing and natural and wonderful and exhausting all at the same time. I wish she could breast feed and manage without the tube. That is our goal at this point. I think that she is learning a bit everyday about how to manage coordination of her swallow and breathing. I promised her that one of these days we'll take that stupid tube out and we won't put it back in.

Watching the Dr. insert a tube up your baby's nose, down their throat and into the stomach is heart wrenching. She cries, gags, sneezes and flails about. My heart does little flip flops but I keep my face nuetral and my energy calm so that I can support her through the experience. It must feel awful. Her screams calm down into little mewling kitten cries as I pick her up and comfort her and within minutes she is back to normal - well - normal for her.

After our town trip Penny told me that she had arranged for some other moms to come over and help out until Brent came home. A wonderfully kind lady named Anna came here, cleaned some and chatted with me, and as she left Colleen Mucha arrived and started folding laundry and baking muffins. I don't have my birth mom around anymore but I sure felt like I had one today - 3 actually! I'm blessed to be living in such a supportive and wonderful community. We ate a dinner prepared by a lady named Katy that I have yet to meet- she made a delicious pot roast with potatoes,veggies and salad - so wonderful. Thank you Katy.

I'm exhausted and the baby is asleep. It's time for me to hit the hay. I promise that one of these days I'll spend more time writing an interesting and lengthy description of Anaya's current state of being. Lots of love to all of you who are sending your love and prayers to our special baby Anaya. Goodnight. P.S - See you again around 3am.

Monday March 29, 2010

This photo was taken when Anaya was 7 weeks old - just as she was beginning to smile. She had some beautiful baby smiles. I think that one of the things her illness has changed the most is her ability to smile. It has been days since she last smiled for me. My daughter Solara has better luck getting Anaya to smile than I do. I'll know when she's getting better by how often she smiles.

It's 1 am and Anaya and I are up because she's having gas pains. I think the best thing about a feeding tube is that you can hook up a syringe to the end of it and actually pull air out of the stomach to help relieve gas. I just pulled out 2 ounces of air from her belly. I think the probiotics make her a bit gassy. It's no fun having a belly ache. Note to self - less probiotics at bedtime!

Other than the gas Anaya is doing very well today. She has an appointment with Laurie Knox for some cranial sacral / somatic release therapy today. We will be in Nelson most of the day as Solara needs to have a tooth fixed afterwards and we also need groceries. Full town days can be brutal if Anaya isn't feeling well. I really hope today is a good day.

Brent starts work at Hellman tomorrow. I'm frightened about being here alone with the baby. Mostly I worry about getting overwhelmed with the scope of all the things I have to do. Take care of baby, make something to eat, eat it, pump, feed baby, walk dogs, do laundry, tidy,take care of baby, feed baby, pump, make something for lunch- it goes on. This list becomes difficult because she needs to be held almost all the time or she starts screaming and ends up choking and gasping for air. I cant just put her in the crib and walk away to work on household chores. Hell - I have to take her to the bathroom with me when I'm alone here. She just lays on a clean towel on the floor.

My dad says he's coming to visit next week. I'm glad. I'm so grateful for the support he's given Anaya and I this past month. Perhaps he'll be able to hold Anaya while I toodle around. I'm having a meeting with a Nurse named Colleen today. I think she's only available part time for a shift or two per week. I never thought that we would have such a hard time finding a full time nurse for this position. In my opinion it's a good job. Caring for Anaya involves a lot of cuddling and playing. She also needs her massage and physio exercises every day but it's no hardship. I'm relatively easy to get along with as long as you enjoy people with strong personalities - lol :) Apparently I intimidate some people, I've never understood why. I'm one of the most sensitive people I know. Anaya does cry a lot when getting to know new people but I think that with time she would come around and love her nurse, too.

Well, Anaya has gone back to sleep and it's time for us to go back to bed. Remember that nothing is impossible. Free yourself to dream big and make it happen. Pray that Anaya gets a nurse immediately so that I have some help this week!

Thank You!

The fundraiser last night was an incredible success. There were so many wonderful people out to support our baby and our family. We are so incredibly grateful for all of your love and support.

We are also grateful to the team that organized and ran the event and the volunteers who helped out in many ways. Melissa, Shelann, Mark, Tom - We love you and know that this would not have been what it was without your help. To the musicians, artists and sponsors - we love you and think you rock.

I went home at 9:30pm to head to bed with Anaya - who was up again at 3:30 am. So I didn't get to see how the end of the night went, but I heard it went well.

Saturday March 27th, 2010

So here we are, the big day. The day of Anaya's fundraising party. For anyone who would like to attend the information is as follows.

Where: Procter Hall
When : 4 pm to 2am
What: Food, silent auction, live bands, DJ's

This event is staffed by volunteers and was coordinated by telephone - so if we have any little hiccups please have patience.

Everyone is welcome. Many people and businesses in the community have contributed to ensure the success of this event. Admission is by donation and kids eat free.

We will be accepting cash or cheques made out to Anaya Cassin-Potts for auction items, entry and dinner. All funds raised for Anaya will go towards her unconventional treatments and her family's other expenses. Anyone wanting a tax deductable reciept can make their cheques payable to the Procter Hall Society with "Anaya" in the subject and they will be given a tax receipt.

On another note...

The last few days Anaya has been conciously moving her feet to rattle a little toy of hers. This is a fantastic achievement and to me it shows how aware and determined she is. There was a fellow here from the Nelson Daily News who seemed to think little of it - but that is only because he is not a father and does not understand the love and hope we have for our beautiful baby. Anaya has been showing slow but steady progress and the fact that she can move her feet intentionally shows that the nerves conducting the signals to the muscles are in fact working. Ask anyone with MS how miraculous it is to get the use of an appendage back. Ask anyone trapped in a paralyzed body how badly they want to move and how miraculous it is when they finally bend a finger. This small step in Anaya's condition is a GIANT leap forward and should not have been trivialized in the article by the Nelson Daily news.

As the parent of a child with a severe disease causing disability I have been pushed entirely out of my comfort zone and into a realm I haven't known before. Where once I have judged others I now stand, knowing the only thing I can do is love my baby unconditionally and care for her needs. Wanting nothing more than to see progress toward her healing and for her to overcome the incredible odds and the judgements of others.

Have you judged others without compassion in the past as I have? Let todays wisdom be to not judge another until you have walked in their shoes. May I be forgiven for my errors and loved for my ability to admit it.

Thursday March 25, 2010

Finally a decent sleep! Lately I consider a sleep decent if it doesn't involve getting up for long periods before 4 am. Waking up today at 5am with Anaya hungry was refreshing. I think she slept so well because I set the feeder to give her 20mls of milk every hour for the second half of the night. Not enough to fill her up- but enough to keep her from waking up really hungry.

My Procter friends who are nursing moms that were providing Anaya with fresh milk both had to stop pumping due to a cold and a pumping issue. I am going to post on the breastmilk page that we need some of the milk (15-20 oz a day) fresh. We use the milk from the freezer mixed in with the freesh milk so that Anaya gets a mix of beneficial enzymes and bacteria. I'm still pumping about 6-8 ounces daily. I'm taking herbs, domperidone, vitamin D and drinking a bone broth soup with marrow daily. I feel like my supply is not catching up very fast. But here I am - feeding the baby on my lap through her little tube while the breast pump works away.

We have given Anaya different things as supplements to help her get better. She gets digestive distress with some of them so now I take them for her and hope that the benefit of them will pass through my milk to her. In the past few weeks the supplements we've given her have included: DHA oil, Hemp oil, Acidophilus, Bifidum infantis, Iso Phos, Vitamin C,Vitamin D, Iron, coenzyme Q10, Antioxidant superfood from univera, kidney and spleen herbs from traditional chinese medicine, and homeopathics. I've just ordered a new homeopathic remedy for throat mucus that i hope will really help the baby on the phlemmy days.

Some of the above gave her crazy gas, the superfood made her throw up. We only continue to give her what her body responds well to. I give the rest through me.

Anaya's cranialsacral and acupuncture session went really well the other day. It seems as though Laurie gently relieved Anaya's stresses and anxiety throughout her body. She slept very well afterwards. Micheal smith suggested we eat bone broth with marrow everyday to give Anaya's brain the building blocks it needs to repair itself. It's now a permanent kitchen fixture - on the counter in the slow cooker- simmering away. I'm supposed to cut back on starches and eat nutrient dense foods for Anaya's benefit - so lots of meat and veggies and fruits. Less dairy, less pasta, less sugar. This will be difficult as it can be so hard to cook a meal while caring for the baby. And I love sweets.

My friend Ellen came by yesterday afternoon with some food and she watched the baby for a bit so that I could nap. I was exhausted. It was so great to sleep a bit. Ellen is one of my friends who really understands what it is like to have a very sick baby. After Ellen left, Penny came over to help with Anaya so that I could do something about the color fading in my hair. I want to look ok at the event on saturday. When we were at the childrens hospital I put some purple chunks in my hair to lighten my mood and make Anaya smile. I've never had vibrant color in my hair before. I love violet. Anaya likes to watch my violet bangs falling beside my face. Anything for the baby!

Brent and I got a gift yesterday of some hand made tea mugs from Lisa Martin. They are beautiful and as I sip from this cup of chai I am warmed and soothed.

Our elder daughter just headed out the door to school and now it's time to prepare for our medical team meeting today. Let's hope the scale shows positive results!

Wednesday March 24th, 2010

As Anaya and I have been up since the wee hours of the morning I'm going to make this post short and sweet. I should have time to do another later. I have such exciting news to share. A local artist - Shayne Brandel, has donated a beautiful painting to Anaya's Auction and the bidding has begun online. Check it out at this site:
Painting

You can place a bid by e-mailing him at shayne@shaynebrandel.com

Also Candee at The Hair Chair in the Procter Schoolhouse has offerred to do haircuts next week and donate the proceeds to Anaya. Please give her a call at 250-551-4410 to book your appointment. Her new salon in there is gorgeous.

I'm going to try and take a desperately needed nap now. I wish the nurses that were hired to care for Anaya would start showing up for work. We are looking hard for an RN that is open minded and wants a great job. Please e-mail me if you know one. maraglow@gmail.com

Tuesday March 23, 2010

Today was very busy. Anaya and I saw Micheal Smith (Dr, Traditional Chinese Medicine) and Laurie Knox (CranialSacral Therapist and TCM). In between appointments we got to see two friends at OSO Negro for a tea. My new friend Jenny has a beautiful son with hydrocephalus who was born a month before Anaya. They have had their time in the Alberta Childrens Hospital too. They have been through scary moments. It's nice to talk to another mom who is going through a shared experience of having a baby with health issues that is almost the same age.

It is hard to tell how today's therapy has effected Anaya because she's been sleeping and resting alot. I suppose that is better than cranky and crying :) I tried breastfeeding her again but she was too tired and choked on it. She can try again tomorrow when she is well rested.

We got an automated feeding pump for her in the mail yesterday. It is a very small unit that can fit in my purse. It has a rate and dose control and a timer so that we can ensure she's getting the right amount of breast milk without us having to fill up a bunch of syringes. I can also set it to feed her a wee bit at a time when she's sleeping at night. She should really pack on the pounds now!

I'm exhausted tonight and I would like to fill you in with more details as to the events of the last few days - but it will have to wait for tomorrow.

Anaya Nursed!

After a bath and a massage where I stimulated her energy meridians Anaya started rooting at the breast - and proceeded to eat an entire meal without choking! Maybe the feeding tube will come out sooner than we thought! My baby girl is doing well. I hope she will come back to breast feeding We will just take it easy and see how it goes. Yay BABY!

Saturday March 20th, 2010

Some days when Anaya struggles it feels like a lead weight on my heart. This morning Anaya seemed to have woken up with a touch of a cold. Her little nose was stuffy and her throat was phlemmy. Babies don't really know how to cough on demand, so she clears her throat repeatedly which sounds like bubbles breaking through wet mud. It's very frightening. I have to hold her vertical and wipe her mouth out with a dry clean cloth. Even then sometimes she'll inhale that yucky mucous and start choking, her lips turning blue. I have to tip her upside down and pat her back - trying to get gravity to help get the fluid out of her airway.

It's moments like this that I really miss my mother. She passed away when I was a teenager. When I need someone to call up and cry to and blabber on about how frightened I am and how uncertain I am and how the whole world feels like it's falling apart - I wish I had my mother. My grandmother has been here for me - but she has her own health issues and I don't want to burden her with my emotional dilemmas. Usually I call up a friend and gently touch on my feelings, skirting around my reservoir of emotion - because when this dam breaks I might lose it. The negative thoughts that I push down a hundred times a day become stronger when Anaya struggles. That's when I have to fight harder to believe she can heal. To believe that anything I'm doing is making a difference. I have to hold onto this belief and trust in Love and I know that, quashing down those thoughts of funeral parlours and crematoriums and grief. I hold on to the love and belief of my family and friends and it buoys me up out of my despair enough to know that everything will be okay. That I have to trust in life, trust in the universe, trust in the magic known as "God", trust that even in death there is a new beginning and that it's not something to be frightened of.

I fear the emptiness that follows a death. The hollow moments when you expect your loved one to walk into the room. Awakening from dreams of pleasant distorted reality to an aching heart and memories of moments lost in time. I fear waking up and finding her cold and breathless. I fear these thoughts the most.

The fact is that Anaya is here now. She's doing well. This mucous is just a cold. She's going to get over it. She is healing. The myelin is growing like warm fatty little sleeping bags on her nuerons. She is opening her eyes wider, moving her arms and legs more, paying close attention to faces and making eye contact with everyone. She knows who I am. This is wonderful, this is enough. When I stay in the moment my fears dissapeer and hope lights my heart.

This next week will be pretty busy. Anaya will be seeing a few different healers, we have a "medical" team meeting with the nurses, doctor and physio lady Maria (who is a darling lady), we have to put away all these medical supplies that arrived in the mail yesterday. And through all of it we put one foot in front of the other and move forward. Forward into the uncertain. But our family has each other and the love and support from our extended family and the Kootenay community and it helps. It helps so much you cannot even know. I had two wonderful women approach me on the street this week. "Are you Camara?" One said.

"Yes" I replied. She handed me some cash and said
"This is to help Anaya and your family." And she walked away down the street. This has happened more than once. It's a miracle that brings tears to my eyes each time. I could never say thank you enough times. Money has been tight this month but Brent just got hired full time at Hellman Kayaks and Canoes and is starting there at the end of the month. So after the fundraiser we should be okay - provided our nurses show up to work.

Veronica had a paperwork issue and hasn't been back since wednesday. I met our part time nurse Nicole today but she's only available for 3 - 6 hours a week starting next week. The other two nurses that were hired haven't even phoned me yet. I'm starting to wonder how long it's going to take to get a routine, a settled schedule. It would be nice to be able to organize our lives a little.

After a morning of Anaya feeling yucky she seemed better this afternoon. I took her to visit my friend Penny who watched her for a couple hours so that I could go regain some sanity with my friend Shelann. We went to the Dump. Very grounding lol. When I returned home my new friend Karen was at the house with her foster dog, vaccuming and helping clean. I have so much appreciation and gratitude. Thank you.

Many people have been helping us, and helping Anaya. Thank you Penny, thank you grandma, thank you Dad and Karma, thank you Procter, Thank you Nelson, Thank you to the Nursing moms, Thank you to Alli, to Tom ,to Marlene and Phil, To the jon and jane does. Thank you for Loving Anaya. Thank you for helping our family. Thank you for reading my blog and caring.

Friday March 19, 2010 3:35 am

Hello 3:35 am. How are you this morning? Seems like you and I are getting to be close friends this week. No offense intended 3:35, but why couldn't Anaya have picked 5:35 instead? This time of day it takes a crane to pry my eyelids open. Now that I'm wide awake I'll fill you in on what's been going on around here the last few sleep deprived days.

My baby girl Anaya was front page news on Wednesday. A local Nelson paper (The Express) chronicled her healing journey and the quest for breast milk and subsequent incredible response from the community. They used the wide eyed picture from tuesday's blog and the article was beautiful and well written. Thank you Express! This led to many people stopping me in town yesterday to talk about Anaya and offer their support. I love Nelson. Baby Anaya will love nelson too!

On Wednesday Anaya's nurse Veronica had an introductory shift. Veronica is a young forty something lady who is fit and healthy and has kind eyes and a genuine smile. She has her masters in Nursing and practices a type of kinetic psychology to heal people using their subconscious. She has also worked in intensive care and with babies. She seems very vibrant and helpful and I hope she wasn't too put off with Anaya screaming for mom the whole time she held her. I desperately needed a nap that day and Veronica cared for Anaya for two hours by herself while I slept. The baby cried THE WHOLE TIME. Poor Veronica. In addition we worked with Anaya together trying to help her adjust to her new caregiver. I think that it will take some time but that if we do this gradually it will build trust and repore and Anaya will be happy with other people as well.

Veronica agrees with me that right now Anaya seems pretty healthy and strong. 2 hours of screaming didn't even wear her out! Anaya used to scream for hours when we fed her baby formula, it made her digestive system very upset. Now that she's back to breast milk her digestion is flowing as it should and she is much less irritable.

Yesterday I took Anaya back to see Ming Klotz Kwan the Qigong master during Qigong class at the church. We went as a family, Brent, Anaya, Solara, Penny and I. We participated in the Qigong meditative exercises and afterward Ming treated Anaya again. She watched, wide eyed, while his hands swirled and vibrated in the air around her. He says he brings in more energy and makes the energy move through the body - unblocking areas of disease. This certainly is safe for Anaya and she seems very calm during and after the sessions. I have also booked her to see a cranial sacral therapist that uses a nerve impulse device and a TCM for Tuesday.

Today may turn into another town day as there are things that need accomplishing. Now that Anaya has gone back to sleep I think I'll turn in for another hour or two.

Tuesday March 16, 2010

Anaya Xanthe Delia Cassin-Potts (6 months old) was diagnosed as having a demylinating nueropathy of the brain last month at the Calgary Childrens Hospital. Her symptoms have included delayed development, choking while eating, sleep apnea and a sarcastic looking eye roll. After being told that her condition was degenerative and palliative we brought her back to our home in the Kootenays. We were told that there are no conventional treatments for this disease. We were given books on how to prepare for the death of our baby. We've been given lots of medical type supports for Anaya including home oxygen and nursing support. Our doctors here include Dr. Fitzimmons and Dr. Kalia, both of whom are on our side and have gone above and beyond their duties to help our family.

We've decided to believe that our daughter can heal from this disorder. We are trying numerous alternative therapies. She is seeing a naturalpath, a craniosacral therapist/reiki master, a medical qigong master and a Dr. of Chinese medicine. She has been prescribed herbs, supplements, vitamins, probiotics, omega oils and massage. We want to give our baby the best opportunity possible to heal herself.

During the course of our journey I (Camara Cassin, Anaya's Mom) began producing less breastmilk and Anaya began to be supplemented with formula. She developed severe reactions to all the formulas we tried including gas, vomiting and mucous. Eventually in desperation I reached out to other mothers to help feed my baby and the community has responded. Lactating mothers are contacting me in droves wanting to donate their breast milk to help feed Anaya. Local baby business Mountain baby has donated pumps to moms and put out a donation envelope. Our family members have shown their support. It has been a week of healing and small miracles.

Anaya has responded very well to our initial treatments, this is especially obvious now that she is on a breast-milk only diet again. She has been wide eyed and alert (we were told she couldn't open her eyes due to muscle weakness), she has been moving her arms and legs more and watching her hands (we were told to expect mostly paralysis), She knows who I am and plays favorites - indicating her cognitive abilities (we were told she'd be limited). It goes to show you that we do not have to believe everything western medicine says. Healing and miracles do happen with the right attitude and the ability to try.

Anaya is very particular lately and needs constant care every day. I spend most days holding her in my arms, pumping milk and occasionally writing on her blog. Her father Brent prepares all our meals, cleans, does errands and grocery shops, prepares our older daughter for school and takes the dogs out. It is very busy around here - like a little earthquake with a small radius, our lives revolve around our baby. Around healing Anaya.

Our beautiful baby girl teaches us incredible lessons in patience and in how to allow others to help us in our time of need. I cannot convey enough gratitiude to those who have contributed thus far in any way to Anaya's health and the well being of our family. We are so blessed to be living here among people who truly care for one another. Today my neighbor brought over some food she made for us and some milk that she pumped for Anaya. Where else would this happen? Bless your heart. Our extended family have been very supportive. Without them we wouldn't have made our rent this month. It has been a very expensive month.

Our room mate Tom Best, along with other friends and community members, have put together a fundraiser for our family to happen on March 27th at the Procter Hall starting at 4 pm with food and acoustic music. There will be a silent and live auction of donated items followed by live local bands, followed by DJ's for the people who like to stay out late and dance. We are still looking for Auction items and kitchen/food volunteers. Please contact Shelann for Auction item donation /Food Volunteering ONLY at 250-229-2341. For all other Fundraiser inquiries please contact Tom Best at 250-505-0275.

In our hearts we know that each of us is only here on this earth a short time. But each of us has a purpose and each of us is given the time to accomplish that purpose. Perhaps our baby Anaya has come to teach us all lessons in appreciation and love for family and children. I can't say for others, but for me she teaches me more and more each day. This is also a lesson in faith. I believe we will find a way to help our baby, and I believe that we can find ways to afford whatever it may cost.

We hope to see you on March 27th at the Procter Hall. If you would like to contribute in some way please contact the people mentioned above. Can't make it to the fundraiser? Keep tabs on the blog for the next event or click the "Donate" button.

Many blessings to you.

A post from Anaya's Dad

This whole experience so far has helped me cherish the few truly wonderful moments I get to spend with my baby Anaya each day. Since Christmas she has been playing strange with just about everyone except Camara. The mommy touch is the all omnipotent power which quells the whines, cries, whimpers and very loud protests. For short little periods I am able to catch her attention by pulling out all the stops and doing anything I can - usually making a complete fool of myself. I have no problems doing this for Anaya because to help her, love her and get a smile or laugh are the greatest reasons for my existance lately.

The rest of my time is spent putting my attention to things that need doing. I have become housekeeper, dishwasher, errand boy, grocery getter, driver, dog keeper, cook, etc. In general feeding and providing for Camara, Solara and Anaya's every physical need while trying to fit in an hour of time for me - usually at night when everone sleeps. In addition to selling water heaters on the phone at night I wake up to warm the pumped breastmilk for the baby and prepare the feeding syringes.

The switch from hypoallergenic formula to breast milk has made an incredible difference in the baby. It's hard to know which supplements and medicines and treatments are working but she definately is better now than she was before.

As soon as Anaya's nurse starts work on Wednesday and Camara and Anaya are taken care of during the day I will be ready to find a job. Up until now it has been impossible for me to work but now it's important that I get a job quickly. I'm a third year apprentice welder, Line cook, labourer that has a new interest in carpentry. Please call me if you need a dependable employee. Brent Potts 250-229-4034

Anaya is healing!

Look at how alert and happy she looks! The docs in Calgary were telling us that she didn't have the muscle strength to open her eyes wide. They're wrong! She's been wide-eyed most of the week! What a beautiful baby we have. I'm certain that the formula was practicly poisoning her. Breastmilk is best! Liquid gold.

Monday March 15 2010 6:30am

Anaya and I Have been awake since 4 am this morning. For some reason she is very phlemmy. I am becoming used to getting up this early. Thank God for the time change, yesterday she was up at 3 am. It is so awful to hear her gurgling, and i wonder if the single piece of Pizza I ate might be responsible. It can be difficult to not over think everything that I do that might be affecting her.

After an hour of crying / whining I gave her a tiny bit of honey on my finger, the phlem dissapeared and she has fallen asleep. She looks so beautiful and delicate. The soft plastic tube coming from her nose across her face and behind her ear does not diminish how lovely she is. It's worth losing sleep over. I can't know how many hours, days or years I get to love this little darling but I plan on enjoying every moment of it. I feel so much overwhelming gratitude to everyone who is helping us out. The breastmilk is a huge deal. The baby formula was worsening her condition. I understand that pumping milk and expressing can be no fun. I know because I do it 5 times a day. The fact that mamas are doing this to help my baby brings tears to my eyes. Thank you with my whole heart. I'm certain that Anaya is gaining weight this week.

Sunday March 14,2010

Today Anaya saw master Ming
"Medical Qigong Teacher Ming-Kit (Klotz) Kwan was born in Hong Kong, and immigrated to Canada as a young man. As a young child, he learned martial arts such as Kung Fu and Tai Chi and studied a variety of Medical Qigong diciplines with Masters in China, South Asia, U.S.A. and Canada." http://www.kootenayqigong.com/master.html

Anaya slept while Ming worked on her. She slept well and I did not notice any signifigant differences until after she awoke. At that point I noticed that she was very alert and also that she was holding her hands together which she has never done before. She had been very gassy beforehand and after the session she had a very good bowel movement and passed all the gas. Anaya will be seeing Ming again on Thursday when i attend his qigong class at the united church.

Today Anaya, Brent and I met Katie and Lisa, who have been so helpful with collecting Milk for Anaya. It was wonderful to meet you, however brief our visit.

They are creating a facebook group for Moms providing milk for Anaya- to organize things a bit. They have been in touch with the local public health Lactation Consultant and have been keeping great tabs on the proper collection and storage of the milk. Visit the group here http://www.facebook.com/group.php?gid=10150144704335438&ref=mf&v=info

Anaya has been much more content the last few days. The milk is certainly one of the things that is benefiting her. I believe that the treatments and supplements and prayers are all helping her heal. She is very alive, very alert and very full of milk :)

Friday March 12, 2010

Anaya is responding incredibly well to being off formula. Thanks to many healthy beautiful mommas who have offered to help feed her by contributing their milk. I have had an overwhelming response from the community today and we now have enough moms pumping to keep Anaya very well fed. Thanks to those who have offered- or would offer. We love each and every one of you.

A special thanks to Katie Sawyer who has offered to be the milk drop spot in Nelson. I look forward to meeting you very soon.

Anaya has been very content today and it sure is better than the screaming little monkey from a couple days ago. :)

Wishing all our readers a fantastic weekend!

Full Belly

Anaya sleeping soundly in her stroller on a full belly of breast milk.

Thursday March 11, 2010

These past few days have seen some incredible good changes in Anaya. We took her to see a healer at Coyote Springs named Margaret Ann. She worked on Anaya for three hours, with her touch for health, craniosacral, reflexology and reiki. At the end of the session we had dealt with any emotional/trauma issues that might be affecting Anaya's Spirit and preventing her from being well. She was born with the cord wrapped around her neck twice and it was likely a very traumatic experience.

Margaret Ann said that she "turned on" Anaya's meridians and adjusted bones that were out of place. She said that Anaya would be breathing easier and that she believes that Anaya will heal from her condition and be right as rain one day.

We have seen immediate changes in Anaya. She is no longer holding her thumbs toward her body as often, is opening her eyes wider, is focusing her attention longer, is lifting and kicking her arms and legs. I caught her watching her hand and opening and closing her fingers. It's wonderful to see her doing these things again.

I have stopped giving Anaya formula on the advice of Margaret Ann. Voila! The mucous issue dissappered. There are some wonderful women helping to provide Anaya with fresh breast milk until my production increases. Thank you to all you lovely lactating ladies! You would not believe the incredible difference it makes in her health. She can breath SO much better and is not screaming in gaseous pain anymore. Mothers wishing to contribute please contact me at maraglow at gmail.com. My supply is increasing slowly. The dr. says it's stress and exhaustion related. Uh- huh. I need to start meditation or yoga or something to de-stress and re-condition my body.

Anaya's grandparents, cousins, aunts and uncles have all made contributions to helping with Anaya's health. Grandma and Grandpa Cassin have made it possible for us to take Anaya to get the treatments that she needs. We are very grateful to everyone for their help. The fundraiser that the community is throwing for our family will be on March 27th at the Procter hall and there will be food and live music, dancing and dessert! It should be a large community gathering and a lot of fun for those who attend. I'm uncertain how long I can be there but I hope to be there for at least part of the evening. Anyone who wants to contribute something can call Shelann at 250-229-2341 or Tom at 250-505-0275

Tomorrow I believe I will be meeting with Anaya's nurse and the coordinator from the nursing agency. This should be interesting and I'm glad we've come this far.

Sunday March 7, 2010

I apologize for the lag in blog posts the past couple of days. First of all the weather has been wonderful, which had us outside in the sun, and secondly Anaya has been having an extra difficult time with feedings. The last three days Anaya started throwing up mucous. Nothing but bubbly phlem. It was awful for her. Her feeds were going badly - with lots of choking and gurgling followed by bouts of extreme irritability. We've been trying to get more calories into her in condensed amounts using both conventional and unconventional products - however she became lethargic and slightly dehydrated on Saturday.

I got on the phone to Paediatrician Dr. Carrie Fitzimmons of Nelson, who suggested I bring Anaya into the hospital to be assessed and rehydrated. Carrie met us at the hospital and was waiting for us when we arrived. Anaya again weighed in at 5.9 Kg, which is not what we are hoping for. Upon examination it was decided to give Anaya an IV of both Saline and Glucose, however, no one was able to find a vein in Anaya's doughy little wrist.

After several attempts with an IV needle I suggested that we go to an NG (Nasal Gastric)feeding tube to give her the fluids and food she needs. This would simplify the feeding process, cutting down on the amount of choking risk and lowering the amount of mucous produced due to the irritation of the throat due to the choking (aspiration) episodes. In this way we could get more food more often into her which would increase her fluid and caloric intake, help her gain weight, and help her have the ENERGY to HEAL. This feeding tube is not a setback nor is it a life-support. It is a tool to help her in her recovery.

Dr. Fitzimmons showed gentle skill during the insertion of the tube - which only caused a few seconds of discomfort. We were then admitted to the hospital overnight to learn the ropes of the tube and for the observation of Anaya. The tube is pretty simple. It is a small plastic tube that is about two feet long. Most of it is outside of the body, the rest goes up her nose, through her nasal cavity, down through the nasopharynx and the esophogas to the stomach, where it sits happily in her baby belly.

I would like to thank the emergency room nurses that snuck us a sandwhich from somewhere in the middle of the night. We were hungry :) Thank you also to the nursing staff who provided us with the supplies Anaya required - above and beyond the call of duty. Thank you to Nurse Nancy who believes in the unconventional and has inspired me for Anaya's visit to Dr. Warren (Dr. Chinese Medicine). Thank you to the man who was always cleaning. Your job is important.

I never know what to say to non-medical people when they ask what is wrong with Anaya. Usually I just blurt out the truth.

"She has a very serious brain disease." I say while bouncing her gently in my arms and smiling. "But we have a lot of hope and we're not giving up."

At this point I usually get a wide eyed, sad looking response that conveys Compassion and sometimes Pity. I have a blockage up against Pity though - because pity is for people who have no hope and no future. The compassion is different. It's like a life-raft of emotional support that flows from one person to another and bouys them up. Compassion is a good lesson.

Anaya has a purpose here no matter how long she is here for. She is here to teach people lessons deep in their hearts and to inspire them to better things. She is here to teach me and my family. Perhaps she is here to teach you and you wont even know it. The grief that I sometimes feel for a childhood that may be lost is actually my own selfishness and is not usually beneficial to our situation. Don't be fooled though, by my ability to convey positivity, because there is a time in every day that I break down and mourn the loss of my baby's health and the Dr.'s heart wrenching outlook. There are hours in the night that I lay and watch her breathing through her perfect little nose, making sucking motions with her fat pink lips and the love that I feel flows out of my heart and cascades down my cheeks.

I know that we (all who love and care for Anaya) can and will make a difference in her healing and I know for a certainty that she is a pivotal character, around which others are inspired to their truths. It is not for me to say how long she'll stay, nor do we know how long any of us will stay. We can only be here in the now and do our best in the day to day to help her heal.

My lesson this month is BE HERE NOW. Do not focus on uncertain futures or pitiful pasts.

Being in the hospital has me writing slightly more emotionally than usual but I am not a rock and no man is an island. Without the love and support from our friends, family and community - this lesson would be a hell of hells. But amongst us we have enough love to make a difference. Thank you to Trish's family for watching Solara and to Shelann for watching the dogs.

Now that Anaya has her NG tube she is no longer choking. Her risk of pnemonia and aspiration have lessoned considerably and she is less irritable and much fuller ;)She should start gaining weight and I hope to see marked improvements within the next few days.

I have other news for you - but the Oscars are on and Anaya's asleep. Perhaps I should take a few moments here for myself but I will fill you in soon.

Thursday March 4, 2010

Forgive me the hasty blog entry. Bit of a rough day. Anaya still weighs 5.9 Kg. That's the same as last week. We really don't want her to have a feeding tube but if this keeps up it may come to that.

On a positive note - There are many locals contributing to Anaya's Fundraiser at the end of the month. Several businesses and individuals have donated items for the auction, and I've had a couple people volunteer to make food or volunteer in some other way.

The highlight of our day was seeing the photos that Alison Watt took of Anaya. So beautiful. I was moved to tears. The photo above this entry is one of them. She's a great photographer. check out her site.

Tuesday March 2, 2010

Today has been eventful. After all the effort put in to making breastmilk I finally got enough pumped in one sitting to give Anaya a milk-only meal! This may sound simple to you but it's been a daily marathon and today felt like a gold medal win. I want to provide her with what is most nuturing and healthy for her.

That reminds me of why we moved to this area. The draw for us was to have a healthy place to raise our children. A place where the water and air are clean, where there is no rush hour traffic. A place where you can get to know everyone in the village and feel safe sending the kids outside to play. A place where life slows down enough to enjoy the simple things, where entertainment is a walk to the beach and an afternoon swim. A place to grow fruits and veggies and have a big dog. Perhaps I'm an idealist but we have these things here and they are priceless to me. I cannot imagine living anywhere else. This is our home.

Thank you to Shelann and Ally for coming over today and taking photos of Anaya and our family. You are wonderful. We are so thankful to have met you. The photoshoot was casual and Anaya didn't cry too much - but she didn't smile either. Not even when we all acted goofy. Oh well. I'm sure there's some goodies in there.

Anaya has been having a hard time keeping formula down this afternoon. I hope to re-hydrate her with her next feed. It's really difficult to get her to eat as much as she should be eating to gain weight.