Goodmorning.
The visit to the opthamologist was long. We showed up 15 min early for our appointment and then sat in the hall waiting for an hour an a half.
Dr.Lyons took us into his office and asked what our problem was. I told him of Anaya's condition and that we were wondering if she can see anything. I explained that she stopped making eye contact long ago.
He checked her pupillary response - nothing. Then he looked at her optic nerve. He looked into my eyes and said "I'm sorry, the degree of atrophy is very bad. It is unlikely that she can see anything."
I was expecting this but I was hoping for something more. My eyes teared up. I thanked him and left with Anaya. Walking through the hospital I cried. I was talking to myself - it's silly to cry now Camara - you already knew this! Why are you crying?
And we went home.
No word yet from Fed Ex. But two wonderful mamas from Langly BC sent milk on a greyhound bus yesterday. Thank you so much!!!
Saturday, October 16, 2010
Thursday, October 14, 2010
Fed Ex Shipping Sponsorship continued
I am so happy that so many of our blog readers have commented on the Fed-Ex post. I have just heard that there are people within Fed-Ex reading the blog! Our voices are being heard!
One question I've recently been asked is "Why does Anaya need the breastmilk?" The answer has two parts.
Anaya has infantile Krabbe Leukodystrophy, her symptoms onset at age 4 months. It is a demyelinating condition that has taken away the motor skills section of her brain. At 5 months she could no longer suck and swallow at the breast without choking. She was given a feeding tube to ensure her nutritional requirements were met. I got a very good breast pump and pumped my milk for her- but the stress of having found out my baby is expected to die, coupled with no longer having my babe nursing at the breast drasticly reduced my milk supply. We tried to supplement with formula. Her reaction was immediate. She would vomit, have diarrhea and was losing weight. We tried all types. She showed intolerance to all of them.
At this point a couple of friends of mine with babies offered to give some of their milk to Anaya. Then I wrote about it on the blog, then the newspaper wrote about it, then we had a strong response from the Nelson and area community. We were able to switch her back to a breast milk only diet. The response was amazing. Anaya's health stabilized and she started gaining weight.
I later spoke on the phone with an expert on Krabbe, Dr. Escolar in North Carolina. She told me that if Anaya was taking formula it would have a negative impact due to a conflict with her secretion management medicine, scopalimine. I was told that the combination of the two would result in constipation and possible impaction of the bowel. She said the reason Anaya is doing so well on the scopalimine is because of the properties of breastmilk that give it a laxative effect, while maintaining high nutrient absorbtion.
Since then we have struggled to find a consistant supply. I still pump every day - which I have been doing for 9 months, but my supply has never increased. It gradually fades away. Now I get only enough for 1 feeding per day. She needs 8.
Frozen milk donations of large quantity have been our saving grace. When our fresh donations supply falls short, we have a back up. But we use it everyday and when we get low the panic sinks in. Will we have enough? So far we have squeeked by - but with Moms from all over wanting to send us their frozen milk we would definately have enough - if only we could get it here.
Anaya is a special gift. Her presence has touched so many people. Her struggles and successess are lessons to us all. I'd like her to stay healthy, keep growing, and stay alive as long as she's able.
Please help us Fed Ex. It's a matter of life and health.
One question I've recently been asked is "Why does Anaya need the breastmilk?" The answer has two parts.
Anaya has infantile Krabbe Leukodystrophy, her symptoms onset at age 4 months. It is a demyelinating condition that has taken away the motor skills section of her brain. At 5 months she could no longer suck and swallow at the breast without choking. She was given a feeding tube to ensure her nutritional requirements were met. I got a very good breast pump and pumped my milk for her- but the stress of having found out my baby is expected to die, coupled with no longer having my babe nursing at the breast drasticly reduced my milk supply. We tried to supplement with formula. Her reaction was immediate. She would vomit, have diarrhea and was losing weight. We tried all types. She showed intolerance to all of them.
At this point a couple of friends of mine with babies offered to give some of their milk to Anaya. Then I wrote about it on the blog, then the newspaper wrote about it, then we had a strong response from the Nelson and area community. We were able to switch her back to a breast milk only diet. The response was amazing. Anaya's health stabilized and she started gaining weight.
I later spoke on the phone with an expert on Krabbe, Dr. Escolar in North Carolina. She told me that if Anaya was taking formula it would have a negative impact due to a conflict with her secretion management medicine, scopalimine. I was told that the combination of the two would result in constipation and possible impaction of the bowel. She said the reason Anaya is doing so well on the scopalimine is because of the properties of breastmilk that give it a laxative effect, while maintaining high nutrient absorbtion.
Since then we have struggled to find a consistant supply. I still pump every day - which I have been doing for 9 months, but my supply has never increased. It gradually fades away. Now I get only enough for 1 feeding per day. She needs 8.
Frozen milk donations of large quantity have been our saving grace. When our fresh donations supply falls short, we have a back up. But we use it everyday and when we get low the panic sinks in. Will we have enough? So far we have squeeked by - but with Moms from all over wanting to send us their frozen milk we would definately have enough - if only we could get it here.
Anaya is a special gift. Her presence has touched so many people. Her struggles and successess are lessons to us all. I'd like her to stay healthy, keep growing, and stay alive as long as she's able.
Please help us Fed Ex. It's a matter of life and health.
Wednesday, October 13, 2010
Fed-Ex Shipping Sponsorship
We have received a frozen breastmilk donation from a mother in Nanaimo. We are very blessed that the transport of the milk all worked out as we had a friend (Dave) who was actually going to the island and returning to Procter quickly. He picked up some dry ice, which kept the milk frozen solid during the long drive.
I am so thankful to Vanessa, Dave and his daughter Shona for their help.
This morning I contacted Fed Ex about a shipping sponsorship. We have been contacted by moms in Ontario and the United states that would like to send large amounts of frozen milk but the shipping costs are prohibitive. Lets all hope and pray that the Angels at Fed-Ex are going to approve our shipping sponsorship so that we can get milk from these helpful moms to Anaya.
Leave your comments for the Fed Ex Angels with this post!!!
Anaya has had a rough couple of days. She is really struggling with mucous secretions and is needing constant nebulization and suctioning. She isn't sleeping well and mornings seem to be the worst. At this point she is doing much better than yesterday. I was at a business course with Community Futures yesterday but her nurse took excellent care of her.
Today I'm at home with Anaya writing a market research plan and survey, as well as finding my competitors. My business idea is still under wraps until I get my city license. Tomorrow I will continue with my plan as well as take Anaya to see the childrens Opthamologist (eye doctor) who is coming to Nelson for a clinic from the BC Childrens Hospital. We were told she is likely now blind by our pediatrician but I am hoping that the opthamologist may be able to give us a more concrete assesment of her visual condition.
Please take a minute and send some clear breathing thoughts/prayers to Anaya today.
Friday, October 8, 2010
Friday October 8, 2010
There's only so much dwelling one can do on the same topic for any length of time. I have dwelled deep in the depths of my emotions, and have come out with new perspectives. I think that contemplating death is on some level good for the soul. It brings more appreciation to everyday life. More meaning to the moments.
The sadness that was so overwhelming initially has broken like a wave over rocks. The water still remains but the inertia is gone. Now grief sometimes grips me in moments of sweet tenderness. I have prepared myself for her death so much that I'm done with it for now. She's stable, she's healthy (for her), she's not in apparent pain and there is absolutely no way of knowing if she's going to live to tomorrow or 5 years from now. Hunter Kelly - a boy with Krabbe, lived to be 7.
So now instead of preparing for and dwelling on death I'm preparing for life and living.
The picture above is of Anaya in her sling wrap on our walk tuesday. I found a daisy to clip into her hair. Fall is a fantastic season. Life withdraws into itself - preparing for the cold months, some things bloom and then die. It's truly a beautiful amazing thing. The cycle of life and death "For life and death are one, even as the river and the sea are one".
The contemplation of such things brings a certain grace into your life and a certain wisdom into your heart. Nothing is lost. Spring will come again. But this has changed me. I look upon the world with the eyes of the crone. People my age, even older seem so young and vibrant and innocent. Sometimes I find it difficult to connect with them. I find comfort in my matronly friends who have loved and lost deeply and comprehend my grief and my small joys. I seek not to judge, each person is unique and is experiencing life for themselves. None has a more valid experience than the other. We are each here for our own lessons. I don't think we really know what they are until we look back on them.
I look back and know my little love has already taught me so much. "To the depth you feel pain, to the same extent you will feel your joy" - well I'm certain that this is true now.
Our days cycle on, constantly striving to live in the moment. Anaya is well. Sweet, innocent, warm and loved she carries on with her unique experience of life. I don't forsee an ending, I've let go of it for now.
This is Anaya yesterday holding one of her teething toys in her mouth. She is unable to hold things in her hands but has recently discovered how to hold things with her teeth. She is so focused and is concentrating really hard. It was so cute. I wanted to share it with you.
Thursday, September 30, 2010
Thursday Sept 30, 2010
This past week has been a flurry of activity. From coming home from the hospital, resting for a couple rainy days, attending a wedding and then attending a two day seating clinic in Castlegar.
The seating clinic was fantastic and amazing. There is a team of professionals that come from the BC childrens hospital sunnyhill seating division to help handicapped children in the koots with things like wheelchairs, chairs that support their bodies properly, special beds, walkers, standers etc. Russ is the custom builder and he has a van outside the hospital and they take custom measurements and then customize your unit while you wait! It is just outstanding. Russ is the man of the hour. He designed and custom built both a chair and a stander for Anaya.
Anaya seems to really like the chair and the stander will take some getting used to and a lot of practice. It is hard on her body to stand erect, even strapped in as it is, because her little joints and muscles are so soft from never being used. Our physio therapist recommended that we start with a few minutes once or twice a week, after we get some special orthotics to help keep her feet aligned.
You can see in the pictures just how grown up she is now 13 months old! She has surpassed the average life expectancy for kids with Krabbe and we hope she stays strong and stays as long as she feels inclined.
I also got excellent news yesterday. I got accepted to the smart start program so I will be working on developing a business plan for the next couple months. I will need to spend a couple days a week in Nelson but the rest of the time I can work from home and be close to Anaya and HAVE AN INCOME!!! I'm really excited about the prospect of having a challenge that stimulates my mind, makes money, and allows me to be at home with my little love in case she needs me.
Anaya is doing very well health-wise this week and although the trips to Castlegar were strenuous I think some mellow time and rest today will do her good.
Saturday, September 25, 2010
Saturday September 25, 2010
Good morning world!
Anaya and I are back home. She responded really well to the antibiotics and all the love she received in the hospital. She is still dealing with a stuffy nose but her lungs are clear. Thank you to everyone who helped with her recovery - by pumping milk, bringing food, visiting, praying and sending your well-wishes.
The day we went into the hospital our dog Alexander died in a tragic accident. As a family we've been grieving his loss. Pets come so close to the heart. I believe he thought of himself as Anaya's protector. He used to keep other dogs away from her - and strange people too. Now I'm certain his spirit will be there to guide and protect her as she continues on her journey. She was the only one he kissed every morning. A little delicate lick on the cheek. It was always the sweetest thing to witness.
He had his faults but we loved him anyway and he will be and is sorely missed.
Rest Peacefully Alexander. I hope to see you in my dreams and I'm counting on you to be there for your baby girl when she needs you.
Anaya and I are back home. She responded really well to the antibiotics and all the love she received in the hospital. She is still dealing with a stuffy nose but her lungs are clear. Thank you to everyone who helped with her recovery - by pumping milk, bringing food, visiting, praying and sending your well-wishes.
The day we went into the hospital our dog Alexander died in a tragic accident. As a family we've been grieving his loss. Pets come so close to the heart. I believe he thought of himself as Anaya's protector. He used to keep other dogs away from her - and strange people too. Now I'm certain his spirit will be there to guide and protect her as she continues on her journey. She was the only one he kissed every morning. A little delicate lick on the cheek. It was always the sweetest thing to witness.
He had his faults but we loved him anyway and he will be and is sorely missed.
Rest Peacefully Alexander. I hope to see you in my dreams and I'm counting on you to be there for your baby girl when she needs you.
Saturday, September 18, 2010
Saturday September 18, 2010
Anaya started having breathing difficulties yesterday. I brought her to the hospital. She has pneumonia and is now on antibiotics. She slept all day. She is now awake and distressed. I must go.
Tuesday, September 14, 2010
Tuesday September 14, 2010
Fall is definately here with a vengence. The hot winds of August have been replaced by the cool grey shroud of fall. The leaves are turning yellow, orange and red. It reminds me of last year, freshly home with my newborn baby Anaya. She was so precious and such a voracious little feeder. She pretty much nursed all the time. My memories of the time after her birth are clouded. What is there to remember? She nursed and slept. Time is stealing away the precious moments I didn't catch on film. Which day did she first smile on? I don't remember, I didn't write it down - what day did she lose her smile? I dont know it happened gradually.
In general I try NOT to remember what she used to be like before she got sick. Because then I grieve for what's been lost. I try to stay in the here and now. I breathe in her clean baby scent. Kiss her sweet soft cheek and revel in her simple presence. I have no idea how long we will go on like this but that's okay. As a whole I think she's still aware of things that are going on around her. Her mama still brings her comfort and she's not suffering every moment. The apnea seems to have lessened in it's intensity. She no longer turns blue several times a day. The choking has gotten less, the mucous is much more manageable, she only needs suctioning a few times a week lately. Would it be wrong for me to pray that things stay like this until the end? I don't want her to get worse. I don't want her to suffer. I would rather be suprised and wake up to find she's left us. But I don't get a choice. I just get to go along with her on her journey. The rest is up to her and, for lack of a better term, God.
My maternity leave has ended and I'm seeking to make work for myself. I've gone to the community futures program with an idea for a home-based business. So that I can be close to Anaya and still make money. I can't imagine missing that many hours of her life. At least when I work at home I can take a five minute break and hold her, kiss her, sing her a song and let her know that I'm still here. If I spend too much time away would she forget me? Am I attached to the idea that she knows me? Yes. I want her to know me.
Financially things are tight. A lot of money got spent in the early days of Anaya's illness. Back when I still thought that there must be a treatment that could stop the progression of the disease and heal her. We tried everything - and so many things made her worse- or helped a wee bit - or did nothing. A word of advice to moms of young babies. If a naturopath or TCM tells you to radicly alter a baby's diet with the addition of herbs and supplemnts DONT. God it made her so sick. She was puking and pooping and losing weight for weeks. Then we tried more energy-related healing methods. It didn't hurt her but it didn't seem to heal her either. We did meet a lot of very helpful healers who had their hearts in the right places. Some days we spent more than $500 a day...I don't know why I'm rambling on about this. I do not regret trying everything we could. I just wish it had worked. I wish my baby was cooing and smiling and nursing. By now she'd be walking. She might even say things like "mama" or "dada". Instead I'm trying to figure out how we're going to move her when she gets bigger so that we don't dislocate her shoulders.
I'm going to stop torturing myself now. Stay in the PRESENT Camara!
Anaya is still sleeping. In another hour our nurse will be here to help with her. I'm working on my community futures application and I have the will to succeed. Everything is going to be ok.
Thursday, September 9, 2010
Thursday September 9, 2010
Anaya slept well last night. It's amazing how much a change of position helps her. Her favorite way to sleep is with her head over my heart. Her breathing clears right up and she drifts off into her dreams. I wonder if she "sees" in her dreams. She did have vision for 5 months.
Today is the day I was born. My mother is deceased and today is one of the days I miss her. Thank you for birthing me, mom!
Solara sang to me in bed this morning. It was sweet. :)
Today is the day I was born. My mother is deceased and today is one of the days I miss her. Thank you for birthing me, mom!
Solara sang to me in bed this morning. It was sweet. :)
Wednesday, September 8, 2010
Anaya's viewpoint
I am warm
my tummy is full
Mama holds me
My toes tickle
my feet twitch
I see colors flying - my angels dancing
breathing in breathing out
I hum a sound and yawn
Mama runs her fingers through my hair, over my brow
Oh - the sweetness of touch.
Tingling awareness of light feathered moments
Needing to move I arch and bend
My mommy helps me
She is my support
I feel her kisses gently on my face
I open my mouth and smack it closed
I want to smile - Good morning Mommy!
my tummy is full
Mama holds me
My toes tickle
my feet twitch
I see colors flying - my angels dancing
breathing in breathing out
I hum a sound and yawn
Mama runs her fingers through my hair, over my brow
Oh - the sweetness of touch.
Tingling awareness of light feathered moments
Needing to move I arch and bend
My mommy helps me
She is my support
I feel her kisses gently on my face
I open my mouth and smack it closed
I want to smile - Good morning Mommy!
Tuesday, September 7, 2010
Tuesday September 7, 2010
The cool air of the morning caressed our faces, the scent of lingering woodsmoke alighted gently on the tip of my nose. Anaya and I snuggled deeper into the blankets - surrounded by warmth. Knowing that tuesday mornings is Bryna Martin's morning at the Procter Bakery I felt inspired to get up and take Anaya for a cup of coffee in the warmth of the oven-heated bakery. Joanne is taking today off in lieu of thursday and so it is a nurseless day. Nurseless days are generally quiet days for me. I spend time with Anaya and reflect on life.
After dressing us both up nice and toasty- we zipped down to the bakery. Bryna is so on top of her baking days. At 8 am there were already cinnamon buns, muffins, scones and she was working on apple tarts. It has taken me a while to get to know Bryna, we were pregnant at the same time and her daughter Ella is only a few months older than Anaya. Bryna is a sweet and kind woman with a good sense of humour. We spoke of children, we spoke of times before children and how life changes after you welcome a child into it.
I held Anaya in my lap and sipped my coffee, turning the feeding pump on and listening to the little sounds it makes as it gently pushes the warmed mama-milk into her tummy. She makes contented little sounds - although she was a bit wet in the throat this morning. I took in the sweetness of her face, her blond hair has gotten longer - creating a golden halo. I had clipped a small white flower clip into her hair on my way out the door and it looks so cute there.
Returning home to the breast pump I sit here now and write. The day feels like one of creation and kitchen warmth. Perhaps some baking could be done if Anaya will cooperate. I plan on doing some of her favorite things with her today. Singing to her, walking with her, bathing her. Onward with love we go!
Sunday, September 5, 2010
Sunday September 5, 2010
This picture of Solara and Anaya was taken a week ago, the day of Catherine and Charlies wedding reception. Anaya looked so sweet in the outfit - and her adoring sister was sweet too!
We had a small birthday dinner for Anaya last week. A few close friends came over and we even had a cake. I put a little bit in Anaya's mouth do that she could taste it. She seemed to enjoy it. I also put a sucker in her mouth for a few moments and she liked that too. Her birthday WAS a big deal. I just haven't been inspired to write about it. It was a deeply personal experience for me. I am very happy my little girl has been doing so well and is still here with us. She beings more joy than sadness to my life. I think sometimes I write too many sad blog posts and not enough happy ones. I guess it's because when I get down I feel like writing to get the feelings out. This week I will strive to share more of the fantastic moments with you.
Today is a stay at home Sunday. This morning Anaya has been hanging out with Brent while Solara and I puttered in the kitchen making blackberry peach jam. Our neighbours (Raeanne and Lloyd) let us pick some of their blackberries. Solara, Anaya and I walked over there yesterday. Let me tell you what blackberry picking sounds like. OUCH!!! I got pricked a few times. Before we went picking we canned diced tomatoes. I had initially given up on the idea but Solara was persistant because she loves dicing tomatoes.
This week Anaya has been more phlemmy than previously. The start of August was so great for her. I'm not certain exactly what has changed for her but I think it could be teething. She now has two teeth on the bottom and two coming in up top. Poor little darling. Sometimes,even in her sleep, she mews in pain. I've been giving her ibuprophen and rubbing her gums. Little dear can't even chew on anything to relieve the pain. The painkillers seem to help. She's out cold right now - we gave her some medicine a little while ago.
Now it's time to pump again. I can't believe I've been pumping now for 8 months. I miss the feeling of nursing a baby. I miss her looking up at me with her big eyes. I should have taken more pictures of her when she was first born.
Saturday, August 28, 2010
These pictures are of Anaya in the days surrounding her 1st birthday. I often wonder what Anaya is experiencing and I thought I would try writing a post from her point of view.
This morning I awoke and it was hard to get a breath. I move my eyes back and forth- trying to find my mommy but I can't see her. I can't see anything. I cough and my mommy picks me up and wipes out my mouth with a soft cloth that smells of clean laundry. It tickled the back of my throat and I gagged. A big gob of mucous came out - but still I could only take small shallow breaths. Mommy carried me down the stairs (thump, thump, thump) then she laid me down and turned on the Incredibly Loud and Scary Thing that is the suction machine. She opened my mouth a stuck the tube down my throat. It hurt and my eyes teared up. I gagged repeatedly - trying desperately to get it out. I wish I could reach up with my hands - but my arms wont move. Mommy pulls the sucker out and I experience relief and I can breathe again.
I cry and try to yell to tell her how awful it is - but all that comes out is a little mew. Mommy snuggles me and holds me close, whispering that everything's going to be okay now that she's got me. Resting my head against her soft chest the sound of her breathing and the thump thump of her heart beat calms my fear. I take deep breaths. I feel the soft touch of mommy's kisses on my forehead and the bridge of my nose. She smothers me with little kisses and I love it.
Now I hear the Not as Loud noise that makes the cool wet air. Mommy is still holding me and the salty air is in my mouth- in my nose. I breathe it in and it makes my throat feel better. It feels good to breathe it. It tastes salty and salty is one of the only flavours I know. The sound is gone. I feel a drop on my tongue. It is a drop of mama milk. I taste the sweetness of it and move my tongue against my mouth, savouring it. I swallow and it goes down okay. Then I take a breath but - oh no! some of the milk goes down into my larynx and I choke and sputter. After a few more swallows I can breathe again...
Thursday, August 26, 2010
August 26, 2010
Anaya is one year old today. It's overwhelming and awesome. She's doing alright. We are short of fresh breast milk but we are working on finding more donors.
I'm just not up for writing this month. My heart beats in the stillness. My love aches. Little joys come in small moments. I hold space for Anaya's health and keep living.
She still knows me.
Happy Birthday Anaya. Thank you for being my baby, my teacher and my cuddle buddy. Love you forever ;)
I'm just not up for writing this month. My heart beats in the stillness. My love aches. Little joys come in small moments. I hold space for Anaya's health and keep living.
She still knows me.
Happy Birthday Anaya. Thank you for being my baby, my teacher and my cuddle buddy. Love you forever ;)
Wednesday, August 18, 2010
August 17, 2010
The past few days have been incredible. Anaya hasn't had such a peaceful existance since before she became ill. She is relaxed and shows periods of awareness. She is responding in her own way to sounds and touch. Her second tooth is almost in but it does not seem to be causing too much pain. Last week I had an epiphany that perhaps she was having stomach aches and heartburn. I approached our doc with my theory and we are trying some antacid medicine. It really seems to be working. Anaya is refluxing less and seems very comfortable. I have not needed to suction her in days.
We have some new moms that have started pumping milk for Anaya. They are joining the ranks of our Heros, Anaya's Milky Moms. We feel blessed to have you in our lives and can only hope to convey our love and appreciation through mere words.
I would have to say that this week has been one of Anaya's healthiest weeks ever. She is very stable - improving even. She is sleeping well but also has periods of calm alertness during the day.
On my end things are great. How can they not be when Anaya is doing so well? I'm enjoying our moments together. Basking in the saintly glow of her sweetness. I can only hope that she will remain comfortable and in good spirits.
Her first birthday fast approaches!
We have some new moms that have started pumping milk for Anaya. They are joining the ranks of our Heros, Anaya's Milky Moms. We feel blessed to have you in our lives and can only hope to convey our love and appreciation through mere words.
I would have to say that this week has been one of Anaya's healthiest weeks ever. She is very stable - improving even. She is sleeping well but also has periods of calm alertness during the day.
On my end things are great. How can they not be when Anaya is doing so well? I'm enjoying our moments together. Basking in the saintly glow of her sweetness. I can only hope that she will remain comfortable and in good spirits.
Her first birthday fast approaches!
Thursday, August 12, 2010
August 12, 2010
Apparently my comments thing is broken. I'm trying to fix it.
Anaya is doing alright. Recently weighed in at 7.74kg which is 17.5 lbs.
I'm trying to give her more sound and touch stimulation. I think she likes it.
We are trying to find more milk donors for Anaya. I've been pumping all day to try to increase my supply. So far a little bit of extra milk and the heavy feeling of couch potatoness. I've literally pumped for 6 hours today.
Anaya and Solara and I made it through the day without the nurse. I feel kind of lonely and lethargic. I suppose it's just one of those cloudy days. It's been good for Anaya though. She hasn't needed suctioning today. I tried to put her down for a while but she just cried - so I held her and pulled my fingers through her hair and kissed her cheeks. That's really how it's been. Me, baby and the milk pump. I think her second tooth is almost through. I hope she's not too uncomfortable.
Sorry for the lame entry. My heart's not into writing the last few days.
Anaya is doing alright. Recently weighed in at 7.74kg which is 17.5 lbs.
I'm trying to give her more sound and touch stimulation. I think she likes it.
We are trying to find more milk donors for Anaya. I've been pumping all day to try to increase my supply. So far a little bit of extra milk and the heavy feeling of couch potatoness. I've literally pumped for 6 hours today.
Anaya and Solara and I made it through the day without the nurse. I feel kind of lonely and lethargic. I suppose it's just one of those cloudy days. It's been good for Anaya though. She hasn't needed suctioning today. I tried to put her down for a while but she just cried - so I held her and pulled my fingers through her hair and kissed her cheeks. That's really how it's been. Me, baby and the milk pump. I think her second tooth is almost through. I hope she's not too uncomfortable.
Sorry for the lame entry. My heart's not into writing the last few days.
Friday, August 6, 2010
August 6, 2010
How can I possibly drink enough of her in to last a lifetime? This path winds slowly down. Sometimes my heart aches to much to write and I find solace in keeping busy. I bustle around with Anaya in my arms and try to forget she's sick. Then a moment sneaks up on me and I find my heart on the floor beneath my feet. The weight of myself, of my grief, is too much for my heart to bear.
Oh My little love. I want to keep you forever and see you grow up. I'm sorry that nothing we are trying seems to be helping. I have no words...
Oh My little love. I want to keep you forever and see you grow up. I'm sorry that nothing we are trying seems to be helping. I have no words...
Wednesday, August 4, 2010
Guardian
I was changing Anaya's diaper on the grass and Alexander, our Akbash who is taller than our kitchen table and weighs 140lbs, came to lay by Anaya's head to make certain she was well taken care of. Notice how closely he laid his paw to her hand. Every morning he comes to say "Good Morning" to Anaya by kissing her on the cheek. She is the only person he kisses. He's not a "licky" dog. I find it amazing that he's so attached to her.
August 4, 2010
Anaya slept well last night. The only issue seemed to be her breath catching in her throat on inhalation. I held the nebulizer vapour to her sleeping lips until it dissapated. It's interesting how a little saltwater vapour can soothe her throat. Right now I can hear her breathing through the baby monitor and the catch is back this morning. I'll try giving her a neb (nebulizer) in a few minutes, hopefully it will work to soothe her again.
Our little angel seems to be sleeping more lately. Her periods of wakefullness are shorter and less aware. Although who am I to say she is less aware? Perhaps her awareness is more focused than mine with a smaller scope. Perhaps she is aware of each breath she takes, each blink and swallow. I can imagine her smelling the sweetness of the morning air, the scent of the blooming roses, different types of food cooking on the stove. Her awareness is all present time. What a gift.
I can imagine her feeling our kisses on her skin. I dreampt that she smiled at me last night, and puckered her little lips for a kiss. Oh sweet baby :)
Some days are better than others. Yesterday had some hard moments. There was a baby I saw who was about the same age as Anaya. She was playing with her hand in the water fountain, stomping her little foot on a leaf - absorbed in the experience of the world around her. She was so cute and so sweet. My heart ached for my daughter who is unable to stand, unable to walk, unable to reach her hand into the falling water, or stamp her bare foot on a leaf. I accept these things but they sadden me. There are healthy babies everywhere I look. Most of the time it's no big deal, sometimes it splits my world asunder.
Now I shall go help my sleeping baby breathe easier.
Our little angel seems to be sleeping more lately. Her periods of wakefullness are shorter and less aware. Although who am I to say she is less aware? Perhaps her awareness is more focused than mine with a smaller scope. Perhaps she is aware of each breath she takes, each blink and swallow. I can imagine her smelling the sweetness of the morning air, the scent of the blooming roses, different types of food cooking on the stove. Her awareness is all present time. What a gift.
I can imagine her feeling our kisses on her skin. I dreampt that she smiled at me last night, and puckered her little lips for a kiss. Oh sweet baby :)
Some days are better than others. Yesterday had some hard moments. There was a baby I saw who was about the same age as Anaya. She was playing with her hand in the water fountain, stomping her little foot on a leaf - absorbed in the experience of the world around her. She was so cute and so sweet. My heart ached for my daughter who is unable to stand, unable to walk, unable to reach her hand into the falling water, or stamp her bare foot on a leaf. I accept these things but they sadden me. There are healthy babies everywhere I look. Most of the time it's no big deal, sometimes it splits my world asunder.
Now I shall go help my sleeping baby breathe easier.
Monday, August 2, 2010
Sparkles
My Baby,
always have I loved you, never would I abandon you.
Since the moment of your becoming,
I have never been the same.
What memories I have of your solid kicks, your hiccups, rolling around in my womb.
You make me smile.
I remember birthing you.
The water of the tub hummed as I OM 'd through each agony.
You could hear me, I know, singing you into the world.
I dreampt of a life for you beyond mine.
Know this, little one,
It was I who caught your shoulders and lifted you gently to my chest.
Oh you were brave!
So loud and vocal, so feminine in sound.
Your strong little arms waved until you settled.
Your eyes looked into mine and you blinked like you knew me.
My soul knows yours of that I'm certain.
I wrapped my arms around you, as I am now, keeping you warm and securing you in love.
When you struggle, I struggle with you.
Would that I could will these anguishes away.
I fight with my heart.
I long for you to live, every instinct screams within me.
Yet I am coming to peace with letting you go.
You slip a little furthur each day.
One day I know you will slip away from me.
I pray that you will allow me to be there, at your final breath.
Our deaths are our greatest moment- our graduation from this life.
You are weathering this life with such grace.
Your strength and beauty inspires me to poetry.
I am so proud of you.
Many things have changed, but never has my love.
My respect for you deepens with each passing day.
You are my greatest teacher.
My Baby.
Thursday, July 29, 2010
We need a hand!
We planted a good sized garden this year in the spirit of health. The best food for you is the kind you grow yourself. Unfortunately I'm having a hard time keeping up with the weeds. Lots of people have asked if there is anything they can do to help us and now I'm asking for help.
Please if you have an hour or two come help me with some weeding! Call me at 250 509-0593 or send me an e-mail at maraglow at gmail dot com. ( I have to write it that way to avoid spammers getting my addy)
Please if you have an hour or two come help me with some weeding! Call me at 250 509-0593 or send me an e-mail at maraglow at gmail dot com. ( I have to write it that way to avoid spammers getting my addy)
Wednesday, July 28, 2010
Wednesday July 28, 2010
I'm reasonably certain that as soon as I sat down to type she woke up. I can envision her laying on the pillow, mouth slowly opening and closing, blind eyes darting around the room. I'm not entirely convinced that she can't see anything. I think perhaps her ability to focus is gone, but perhaps she can see light and shadow. Maybe auras. Who knows?
Monday the 26th was Anaya's 11 month Birthday. It was also my close friend Penny's Birthday. I decided to celebrate with them by inviting some of Penny's friends over for dinner and suprising Penny. It was quite lovely. We had a turkey dinner outside on the lawn - but the cake was the real winner. Micheal at the Procter Bakery made a triple layer callebaut chocolate cake and then I iced it with callebaut dark chocolate ganache and decorated it with pink icing and edible flowers. I had fun doing that :)
Anaya has been having difficulties with her secretions the last few days and we are just trying to help her stay comfortable. She needs me now. I must go.
Friday, July 23, 2010
Friday July 23, 2010
This morning is one of those blue-sky days. The kind where you wake up and look out the window and can't wait to experience the day. From my vantage point at my milk-pumping station right now I can see only one small cloud hovering over the mountain. The forecast is for SUN SUN SUN and I'm overjoyed. There are a variety of Sun loving things that need to be done today.
1)Mow lawn
2)Walk dogs to lake
3)Pull some weeds
4)Jump in pond
5)Dip baby in pond
6)Pick Raspberries
7)Water everything
List subject to baby's cooperation. Maybe I'll get some help with the mowing part :)
Joanne is coming today. Yesterday she was not here, as she doesn't work on thursdays, but we have a new girl that comes to help on thursdays. Her name is Kali. She's a Care Aide and a nursing student. She's also very meticulous and she helps me keep the house clean. She washed some windows for me yesterday and WOW! They are so clear now you can't even tell that there is glass there!
Despite being overcast and rainy yesterday I had a great day. Anaya had a bit of a gurgle most of the day but it was manageable. She was pretty content to be close by while I cleaned and refilled my herbs and spices containers in the spice rack. I played Mozart for her and she seemed to like it. Penny came over to visit and we sat and chatted and just hung out in the bond of our friendship. I like being with people where silence is acceptable. Where you don't have to speak every second. I served Penny a glass of red wine from the box my dad left here a few weeks ago and she almost gagged. I guess it's off now. Time to toss it!
Once Penny left I went to see a new friend of mine who is a pottery instructor at KSA. Her name is Lisa Martin. I took Anaya with me and we journeyed to her house for dinner and some pottery demos in the studio. Lisa showed me some tricks I did not know and I pulled my very first mug handle. Lisa looked at my first works that I had taken to her house to fire and she said something that really excited me. She said that I have a natural talent for potting and that I'm "Gifted". WOOHOO! I felt like jumping up and down and throwing my hands in the air. I'm good at something that is really fun! With everything that goes on in my life it's sure nice to feel like a have a tangible, valuable skill. I'd really like to take Lisa's pottery class in September, and if Anaya can spare me to be away one evening a week I'm going to do it! Lisa gifted me with a beautiful mug and bowl to take home and I left feeling inspired and motivated and happy.
Anaya is still sleeping in bed right now while I pump and write. Her cherubic little face is cradled peacefully against the pillow. Her chubby fingers stretched out towards where I was laying. She is so warm and snuggleable. I'm so glad to be her mother. I'm so glad that she chose to come to us. She is teaching me more about myself and about life that I ever thought was possible in such a short period of time. We are blessed to have each other.
1)Mow lawn
2)Walk dogs to lake
3)Pull some weeds
4)Jump in pond
5)Dip baby in pond
6)Pick Raspberries
7)Water everything
List subject to baby's cooperation. Maybe I'll get some help with the mowing part :)
Joanne is coming today. Yesterday she was not here, as she doesn't work on thursdays, but we have a new girl that comes to help on thursdays. Her name is Kali. She's a Care Aide and a nursing student. She's also very meticulous and she helps me keep the house clean. She washed some windows for me yesterday and WOW! They are so clear now you can't even tell that there is glass there!
Despite being overcast and rainy yesterday I had a great day. Anaya had a bit of a gurgle most of the day but it was manageable. She was pretty content to be close by while I cleaned and refilled my herbs and spices containers in the spice rack. I played Mozart for her and she seemed to like it. Penny came over to visit and we sat and chatted and just hung out in the bond of our friendship. I like being with people where silence is acceptable. Where you don't have to speak every second. I served Penny a glass of red wine from the box my dad left here a few weeks ago and she almost gagged. I guess it's off now. Time to toss it!
Once Penny left I went to see a new friend of mine who is a pottery instructor at KSA. Her name is Lisa Martin. I took Anaya with me and we journeyed to her house for dinner and some pottery demos in the studio. Lisa showed me some tricks I did not know and I pulled my very first mug handle. Lisa looked at my first works that I had taken to her house to fire and she said something that really excited me. She said that I have a natural talent for potting and that I'm "Gifted". WOOHOO! I felt like jumping up and down and throwing my hands in the air. I'm good at something that is really fun! With everything that goes on in my life it's sure nice to feel like a have a tangible, valuable skill. I'd really like to take Lisa's pottery class in September, and if Anaya can spare me to be away one evening a week I'm going to do it! Lisa gifted me with a beautiful mug and bowl to take home and I left feeling inspired and motivated and happy.
Anaya is still sleeping in bed right now while I pump and write. Her cherubic little face is cradled peacefully against the pillow. Her chubby fingers stretched out towards where I was laying. She is so warm and snuggleable. I'm so glad to be her mother. I'm so glad that she chose to come to us. She is teaching me more about myself and about life that I ever thought was possible in such a short period of time. We are blessed to have each other.
Wednesday, July 21, 2010
Wednesday July 21, 2010
Yesterday Anaya and I had an interesting day. It started out with Anaya sleeping in a new set up beside the bed, instead of sharing my pillow. We didn't sleep quite as awesomely as I had hoped. I think it will take some getting used to. I kept waking up to check her and make sure she was warm enough, and that her head was positioned properly to allow good breathing. She awoke with a gurgle in her throat, which progressed into a full on mucous bubble attack later in the morning.
Anaya and I travelled to Nelson, where we met Joanne for a bite to eat at "Bent Fork". It wasn't my morning for 50's memorabilia and bland eggs so I left rather dissapointed. We went to Joanne's beautiful abode where we set up Anaya's nebulizer machine and tried to get a handle on her secretions. Joanne stayed with her while I ran errands.
I went to the childrens consignment store to drop off some old sleepers and had an emotional meltdown. As I was labelling them with my number I came to Anaya's froggy princess sleeper. It's always been one of my favorites. It fit her for months. Suddenly I couldn't breathe, my eyes teared up, my heart split open and for a moment I saw myself sobbing my eyes out in front of other startled customers. That did it! I mentally grabbed the halves of my heart and forced them back together and sewed it up with self-assurance. She's still here, she's still alive, focus on the now - leave the past and future where they belong. Once settled I decided to keep the froggy sleeper, and bought Anaya a couple new warm-weather outfits. I headed over to Katie Sawyers to drop off milk coolers and proceeded to allow my emotions to flow. She leant me an understanding ear and gave me great hugs. We sipped spicy ginger tea and I allowed the warmth to seep into my aching heart and rejuvinate me.
I went back to Joanne's House and found Joanne and Anaya seated in the rocking chair still trying to get a handle on those nasty secretions in her throat. We decided that we would not take her to her scheduled chiropractic session. I went alone, still in an emotional space.
After the adjustment I picked up some blueberries to share at our planned group meet up in the park. We were to meet Anaya's milk donors or "Milky Mom's" for a blessing ceremony. Again I returned to Joanne's House. Anaya sat in a calm space and had cleared up considerably. I gave her a feed over the course of an hour and then we took her feeding tube out and put her hair in pigtails.
We walked to lakeside park and set down our blanket in the lush grass with the other mamas. We were joined by Rosalyn Grady, a spiritual elder, who led us in a ceremony of blessing for the mama's and their children. We each made a SEED BUNDLE TO REPRESENT OUR HOPES AND LIFE for the next generation. Then it was my turn to speak. I thanked the mamas for giving Anaya the gift of their milk. I explained how much it helps her, how much we appreciate their contribution to her health. Tears poured down my face as I relayed my gratitude and love. I then led the circle in a brief meditation on Presence. Katie gifted Anaya with a necklace from Divine Mother Ama- the woman who hugs.
We were joined by Jean and Claire - beautiful musicians who played music for us. It was beautiful. In all it was an incredible experience. I danced with a very healthy chubby baby and delighted in her joy. I danced with Anaya too, who seemed to love the music. Here are some more pictures and a video is to come.
Friday, July 16, 2010
Friday July 16, 2010
Penny and Anaya Wednesday evening.
Anaya has been having an excellent week. Her secretions appear to be well balanced and she's getting bigger. I'm also doing well this week. Smiles and laughter have reentered my life, thank god for the sunshine!
I promise to write more next time.
Sunday, July 11, 2010
July 11, 2010
.
The sun this past week has been amazing. Anaya enjoys the sunshine on her skin. Her and I danced in the grass. I held her up and spun her around in moments of joyous celebration of life.
I have come to know that she is a part of my life's greatest work. The legacy and mark that I leave on this world. The lessons that she teaches me, and teaches through me, the lessons that she teaches others, they are her life's work. It is so amazing how a little baby can be such a profound influence. Her innocence and sweetness touch everyone around her. Her beauty captivates my heart and inspires me to love more deeply than I have ever loved before. Her fragility reminds me that all life is a blessing and each moment is a miracle manifested.
When I kiss her cheek, and each finger on her hand, the softness of her skin is like rose petals. Her pudgy baby rolls yield beneath the touch like softened butter. It is part of her illness to be unable to metabolize fatty acids on a cellular level, thus she is becoming a pudgy baby Buddha. She is so cute, and it makes me smile, but I know that these fats are poison to her, that instead of giving to her life force they are stealing it away.
My rosebud has slept most of the day away. Last nights festivities at the community hall did not break through her sleep. I danced to the band while Anaya slept in the arms of trusted friends, and in mine. Amazingly, in the midst of the festivities, my brother Christopher and I spent quality time together and talked about life. The choices I make each day revolve around Anaya. My whole life revolves around Anaya at the moment. I am unable to see past the present into the future. I am unable to decide now what I will do after she is gone, for indeed it continues to seem that she is slipping quietly away from us.
The thought of missing her breaks my heart. For I already miss her voice, her smiles, her funny laugh and looking into her eyes and having her really see me. What will I do when I no longer have her baby cheeks to kiss? How will my life continue with the center of it missing?
Today I have kissed each finger and each toe in turn, attempting the memorize the wonder of it, the feeling of having my heart overflowing with love, and with gratitude for the gift of her presence in my life. I am reminded of how much love she has brought to me. How she has answered my prayers in so many ways. She has brought to me a family of community, a family of friends, hearts open wide and honest. We are loved and we are taken care of. We have a safety net of love supporting us and when we fall I know it will be there to catch us. I fear the vastness of my grief and I only hope that my fears are worse than the actuality of it.
"Believe in the Miracle" I've been told recently. I do believe in miracles. I hope for one everyday. It seems that the real miracle here is in what she has brought, and how she has connected so many of us in love and compassion.
The sun this past week has been amazing. Anaya enjoys the sunshine on her skin. Her and I danced in the grass. I held her up and spun her around in moments of joyous celebration of life.
I have come to know that she is a part of my life's greatest work. The legacy and mark that I leave on this world. The lessons that she teaches me, and teaches through me, the lessons that she teaches others, they are her life's work. It is so amazing how a little baby can be such a profound influence. Her innocence and sweetness touch everyone around her. Her beauty captivates my heart and inspires me to love more deeply than I have ever loved before. Her fragility reminds me that all life is a blessing and each moment is a miracle manifested.
When I kiss her cheek, and each finger on her hand, the softness of her skin is like rose petals. Her pudgy baby rolls yield beneath the touch like softened butter. It is part of her illness to be unable to metabolize fatty acids on a cellular level, thus she is becoming a pudgy baby Buddha. She is so cute, and it makes me smile, but I know that these fats are poison to her, that instead of giving to her life force they are stealing it away.
My rosebud has slept most of the day away. Last nights festivities at the community hall did not break through her sleep. I danced to the band while Anaya slept in the arms of trusted friends, and in mine. Amazingly, in the midst of the festivities, my brother Christopher and I spent quality time together and talked about life. The choices I make each day revolve around Anaya. My whole life revolves around Anaya at the moment. I am unable to see past the present into the future. I am unable to decide now what I will do after she is gone, for indeed it continues to seem that she is slipping quietly away from us.
The thought of missing her breaks my heart. For I already miss her voice, her smiles, her funny laugh and looking into her eyes and having her really see me. What will I do when I no longer have her baby cheeks to kiss? How will my life continue with the center of it missing?
Today I have kissed each finger and each toe in turn, attempting the memorize the wonder of it, the feeling of having my heart overflowing with love, and with gratitude for the gift of her presence in my life. I am reminded of how much love she has brought to me. How she has answered my prayers in so many ways. She has brought to me a family of community, a family of friends, hearts open wide and honest. We are loved and we are taken care of. We have a safety net of love supporting us and when we fall I know it will be there to catch us. I fear the vastness of my grief and I only hope that my fears are worse than the actuality of it.
"Believe in the Miracle" I've been told recently. I do believe in miracles. I hope for one everyday. It seems that the real miracle here is in what she has brought, and how she has connected so many of us in love and compassion.
Thursday, July 8, 2010
Thursday July 8, 2010
Anaya had a fantastic day. Penny came by and took care of her so that I could clean the house up for my family visit. I got the dishes, vacuuming and laundry done! Seems like an achievement in my world. My close friend Grant is visiting from Calgary and my father and brother are going to be here as well.
Anaya had her second dip in the pond today. Shelann and her boys and Amy's kids all came over for a swim in the pond. We had a sunny, beautiful afternoon. I think perhaps Anaya is becoming used to cool water. I got it on video again. It's soo cute. She didn't need to be suctioned at all today. I'm so glad. I hate making her gag.
Anaya has been seeing chiropractor Remi Champagne and she seems to have more mobility in her neck. I pray the things we do to help her benefit her in some way. She is my little love and I would give anything to make her better, or relieve her discomfort. The chiropractic seems to help as much as seeing the healer at Coyote Springs. I continue to give her homeopathic remedies to try to increase her comfort and maintain her health.
we're not certain but we (nurse and I) think she might be having seizure episodes. Remember a week and a half ago when I thought she might be dying? That may have been a seizure.
Not such a pleasant thought on such a lovely day.
Solara is looking forward to visiting relatives in Calgary and will be gone for most of July. I hope my little girl will have amazing growth experiences, though I will miss her dreadfully.
I'm always striving to maintain Presence and I hope with all my heart that I'm doing right by my babies.
Anaya had her second dip in the pond today. Shelann and her boys and Amy's kids all came over for a swim in the pond. We had a sunny, beautiful afternoon. I think perhaps Anaya is becoming used to cool water. I got it on video again. It's soo cute. She didn't need to be suctioned at all today. I'm so glad. I hate making her gag.
Anaya has been seeing chiropractor Remi Champagne and she seems to have more mobility in her neck. I pray the things we do to help her benefit her in some way. She is my little love and I would give anything to make her better, or relieve her discomfort. The chiropractic seems to help as much as seeing the healer at Coyote Springs. I continue to give her homeopathic remedies to try to increase her comfort and maintain her health.
we're not certain but we (nurse and I) think she might be having seizure episodes. Remember a week and a half ago when I thought she might be dying? That may have been a seizure.
Not such a pleasant thought on such a lovely day.
Solara is looking forward to visiting relatives in Calgary and will be gone for most of July. I hope my little girl will have amazing growth experiences, though I will miss her dreadfully.
I'm always striving to maintain Presence and I hope with all my heart that I'm doing right by my babies.
Tuesday, July 6, 2010
Tuesday June 6, 2010
This is a picture from yesterday of Joanne using the nebulizer to help Anaya manage her secretions. Anaya is doing alright the last couple days.
We just returned from a family walk down to the general store. It is such a beautiful evening. Nice and warm with a light breeze. Solara found a snake on the road and we helped it get off the road and into the ditch. Hopefully it will stay off and continue to slither another day.
I love all the purple and white flowers growing in the ditch. I love Procter. I love Kootenay Lake. I love seeing all the beauty around me. Anaya enjoys going for walks. She really seems to relax and take it all in. We usually take her for at least one walk a day. I'm tired now and my creative energy is ebbing. Tomorrow I am meeting with Lisa and Rosalyn to plan a group tea for the moms that help feed Anaya with their milk.
Saturday, July 3, 2010
Anaya pre-Krabbe Video
Before Anaya became ill she would smile and coo. She could see and she could move. She used to copy the funny sounds I made. This video is our only video of Anaya when she was healthy. It is a very special moment to me. I have decided to share it with you.
She's so cute and vibrant.
Saturday July 3, 2010
The past few days have been filled with the task of managing Anaya's secretions. She's either been too wet or too dry in her throat. We spend quite a bit of time with the nebulizer and the suction machine.
The stress of it has me emotional and I'm producing less milk today than usual. We still get milk donations from nursing moms in Nelson and we sure use them! Anaya is fed with so much love. Last night I came up with a strategy to make the feeding pump work. The sensor hasn't been detecting the breastmilk in the tube because it is translucent. I colored the outside of the tube with a marker and fooled the sensor. Anaya got full feeds last night.
She is so gurgly this morning. It's like her medicine isn't working. I'd better go suction her again.
The stress of it has me emotional and I'm producing less milk today than usual. We still get milk donations from nursing moms in Nelson and we sure use them! Anaya is fed with so much love. Last night I came up with a strategy to make the feeding pump work. The sensor hasn't been detecting the breastmilk in the tube because it is translucent. I colored the outside of the tube with a marker and fooled the sensor. Anaya got full feeds last night.
She is so gurgly this morning. It's like her medicine isn't working. I'd better go suction her again.
Wednesday, June 30, 2010
Wednesday June 30, 2010
It seems to be a lovely summer day. Anaya and I slept quite peacefully last night despite a broken feeding pump. I set my alarm to awaken and feed her manually. She doesn't seem to be any worse for wear about it.
Anaya has had more difficulties the past couple days. We are having trouble maintaining a balance with her secretions. Joanne suctioned her three times this morning, and my sweet little angel was very brave.
Having Solara home from school may prove to be more of a challenge than I anticipated. Her lively energy rocks my morning like a storm. I'm not quite sure how to tackle this one. She doesn't want to sit still, which I do frequently (milk cow that I am.)
Hopefully the days will settle into something manageable.
Anaya has had more difficulties the past couple days. We are having trouble maintaining a balance with her secretions. Joanne suctioned her three times this morning, and my sweet little angel was very brave.
Having Solara home from school may prove to be more of a challenge than I anticipated. Her lively energy rocks my morning like a storm. I'm not quite sure how to tackle this one. She doesn't want to sit still, which I do frequently (milk cow that I am.)
Hopefully the days will settle into something manageable.
Tuesday, June 29, 2010
Sunday, June 27, 2010
Sunday June 27,2010
Yesterday was as beautiful a day as anyone could have asked for. The sky was blue, the sun shone. We had a family breakfast at the bakery, joined by neighbors and friends. We spent the day in the yard by the swimming pond. Between Brent and I we took care of Anaya, as she was doing really well and didn't seem to mind hanging out in her stroller. We had a few friends over for fun in the sun.
I put her toes in the water for the first time. At first she wiggled and made a very funny little mewling growl that sounded like "oh no oh no! it's cold!" It was her 10 month birthday, and I figured we needed to do something to mark the occasion. I got the dip on video...I was thinking of posting it on here but I'll only do it if there's interest in seeing it. If you want to see the first dip leave a comment :)
Around 5pm Anaya started having issues. She threw up a little bit of milk, but had trouble swallowing it back down. That leads to reflexive swallowing and gasping breaths. I took Anaya in the house and suctioned the yukkies out of her throat. It left her blue and gagging. She started having small jerking motions in her arms and her eyes rolled back. She stopped breathing. I rubbed her chest with my fingers and encouraged her to take another breath. I talked to her..."Come on baby, breathe baby breathe" I placed my mouth over hers and puffed some air into her lungs. She coughed and took a deep breath. I wiped her mouth out with a recieving blanket.
We sat down in the rocking chair that views the back yard. I held Anaya in one arm and held the vapour nebulizer up to her face with the other hand. I called Brent to bring the Oxygen bottle because her breathing was so slow, so shallow. I got her all hooked up and then I just sat there and snuggled her and kissed her a thousand times thinking "This could be it, this could be our last day, our last moment"
My throat clenched and my heart stretched as wide as my house. Oblivious to what was going on with Anaya, my roomate and his friends smoked and drank beer just on the other side of the window. I thought of asking them to leave. I thought of creating sacred space. I decided not to ask anyone to leave. I created sacred space where I was sitting. I created and held the space of love for Anaya around our rocking chair- no matter what anyone else in the house was doing.
Watching my baby struggle with her lips tinged blue, my anxiety peaked, then passed. I found a shelter of strength knowing that I am her mother, I know of all the things she wants close to her, it is I. I bring her comfort. I am doing all I can for her. She knows I love her. If she chooses to pass on such a glorious day, her 10 month birthday, then that is her choice and it is not mine.
Thoughts come and go like clouds mirrored on the surface of a lake. I rock Anaya and hold her warm body to my heart. The oxygen is helping, her lips are pink again, the nebulizer is helping to moisten her dry throat. Did her medicine over dry her today I wonder?
Did I spend enough moments with her? Have my actions counted? Have I left her too often without the comfort of my presence? Have I been a good enough mother to her? Could I have created some kind of miracle that I missed in passing?
All these thoughts come and go. We rock. We watch. I pray and kiss and love.
She turns pink, her breathing regulates, she stops her jerking. Now she is just a sleeping baby in my arms. It's been two hours. I notice that I missed dinner.
I turn off the oxygen bottle and stand up, walking through the house in a sort of daze.
"Where are you going?" Someone asked.
"As soon as I pump I'm going to bed" I reply.
Entranced in the closeness of the intense moments Anaya and I just shared I could not communicate myself. I meditated while I held her and pumped milk. I chant in my head "Galactoceribrisidase, Galactoceribrisidase" That is the enzyme she needs to make to get better. If only I could help her make it. I visualize her cells making Galactocerbrisidase at the ribosomes. I visualize it breaking down the fatty chains and the remnants being picked up to make myelin.
Pumping complete, Anaya and I head upstairs for bed, pausing for a glass of water and a milk bag to connect to her feeding pump. Daddy always takes care of that part. As I close my eyes, after kissing her sweet cheek one more time, I think to myself "that could have been the end, but it wasn't" and I smile and snuggle up to her.
Today was a regular day. No events like the one of the night before. We had a low profile day. Anaya and I took our breakfast and coffee outside in the morning sun. As a family we took two walks with the dogs, one down the road, one to the store. Solara played with some girls and Brent made an incredible salad for dinner. Yesterday's events still permeate my being. Each moment is even more precious today. It made me realize how close I might be to losing my little love, and how incredibly unprepared I am to be without her.
Thursday, June 24, 2010
24 June afternoon
We had a great time at the park. We ran into Meeri and her kids at the beach. Meeri pumps milk for Anaya. We had a good chat.
Sitting on the beach holding my precious babe and watching my older daughter frolick in the water I felt at peace. Anaya's breathing was great all day. No major problems.
Then we went to the chiropractor. Dr. Remi took some x-rays of Anaya's spine, and of mine. We are definately out of alignment. Dr. Remi is going to help us get re-aligned. He's got a new clinic down by the car wash. Sparkling life family chiro. Everyone should have their central nervous system tuned by this friendly young man. :)
Thursday June 24, 2010
We awoke to a clear blue sky, a beautiful sunny day. Anaya slept peacefully on the pillow beside me, smelling slightly soiled. I kissed her cheek to wake her up and stretched out her legs and back to change her diaper. As always her little mews of protest came forth. She just doesn't like the cool air on her bottom. I noticed that her breathing was nice and clear and her skin warm and rosy. Sometimes she can be quite cool to the touch. Kids with Krabbe have temperature regulation issues.
I decided quickly that this was a day to take advantage of. Anaya and I will pick up Solara early and go to the playground at Lakeside. Without a nurse today this is sure to be a challenge but I'm up for it. After that Anaya has a Chiropractic appointment with Dr. Remi.
Leaving Anaya on the bed I step to the closet and pick out a summer dress from when I was pregnant. Hey it still fits! lol. I choose a pretty little dress for Anaya with a multicolored floral pattern. It was given to us by my friend Bryna and her baby Ella. Very sweet little dress. I'm glad Anaya has an opportunity to wear it.
I throw my hair in a bun, bundle Anaya in a blanket and zip down to the village bakery for coffe and eggs. It's hard to cook for myself on nurseless days, and I like chatting with Micheal. We run into Catherine Nixon. She is happy. It's good to see happy people. She's grinning like a schoolgirl. :)
I hope the weather will hold. I hope Anaya will have a stellar day with her sister in the sun.
And we are off to town!
Wednesday, June 23, 2010
Wednesday June 23, 2010
Anaya slept peacefully last night. She awoke this morning with thick gurgles in her throat but I gave her a vapour nebulizer and suctioned some of the yukkies out. She seems to be a bit better now. Brent is in bed sick and home from work today. The tree fuzz floating in the air is just killing him and none of the antihistamines he's tried are relieving it. He didn't sleep at all last night. Poor guy.
The forecast for today is a mix of sun and clouds with a high of 26 deg C. Woohoo!
Today Anaya and I will spend the day outside exploring our garden and working with Joanne. There are lots of weeds in the bean patch that I need to get a handle on. The greens have really benefited from the cool wet weather and I hope that Anaya will receive the goodness of them through me.
My outlook for the day is promising. I hope Anaya will be able to breath easy in the fresh air.
And I see the smile in her eyes. Thanks for reminding me Danielle.
The forecast for today is a mix of sun and clouds with a high of 26 deg C. Woohoo!
Today Anaya and I will spend the day outside exploring our garden and working with Joanne. There are lots of weeds in the bean patch that I need to get a handle on. The greens have really benefited from the cool wet weather and I hope that Anaya will receive the goodness of them through me.
My outlook for the day is promising. I hope Anaya will be able to breath easy in the fresh air.
And I see the smile in her eyes. Thanks for reminding me Danielle.
Tuesday, June 22, 2010
Tuesday June 22, 2010
June has thus far been kind of dreary. The rain brings it's life giving water in sheets of grey and white. When the sun peeks through the clouds the greenery of the Kootenays is astounding. The thimble berry bushes are bursting with flowers, the radishes of my neighbors garden are already harvested, and yet - it feels as though we have only had a few sips of summer.
Anaya has been weathering the storm like the trooper that she is. She has remained fairly steady in her day to day routine. She sleeps, we feed her, we massage her and do excersizes. She gets her special medicines and remedies. She goes for walks with me and Joanne. She loves going on walks. Rain or shine we bundle her up and take her out to experience the world. It seems as though the sounds, and sights and scents really reach out to her and she responds to them in a calm, serenely aware way.
Speaking of "sights", we had Anaya in to see Dr. Fitzsimons last monday and she checked her eyes. Her pupils do not constrict when light is shined into them. The Dr. told me this could mean that she is no longer seeing. Sometimes it seems like she does. Sometimes it seems like she doesn't. None of us really know because she can't tell us. They could do a test at the childrens to find out if she's seeing but it wouldn't matter to me. She is how she is. Even if she isn't seeing she's got a lot of other senses that help her to experience the world.
For instance the scent of wild roses growing on the side of the road after a rain. MMMmmmm....and the peppery wild smell of lupins on the breeze. The feeling of rays of sunshine on her skin. So many wonderful delights.
At the Dr visit we also weighed Anaya and now she's almost 7kg. That means she's gained 2 lbs since february. At least she's growing. Her muscle mass is low because she doesn't really move. So most of her is skin, bone, and baby fat. I love her little rolls of baby fat.
I haven't written much since the fundraiser on June 11. I read a speech aloud that day that really shook me. Bearing my souls heart out loud in front of a group of people took all my strength. I attempted to bring bravery but the tears spilled down my cheeks, my breath caught in my chest and the sobs of grief threatend to steal my voice. I overcame it with a hug from my mother in law and finished my speech. Since then my inner voice has felt quite weak. Sometimes I wonder why anyone would want to hear of my challenges with Anaya, my sorrows, my bittersweet moments of love. Isn't it kind of depressing? I know I sure get down.
The fundraiser was not as successfull as I had hoped. After expenses we raised about $1200 to split between screening and research and our family. The money hasn't come in yet because some people haven't gotten their auction items yet. The auction coordinator is having difficulty getting a hold of some people etc. I've decided that we will just give $600 to the hospital for screening and send the other $600 away to the research lab at Hunters Hope. A few of the items didn't sell and I'm going to put them in an online auction when I have the time and energy to do it. I'll keep you posted on that one. There's an autographed poster of football player Jim Kelly. Any interest?
I've been down for almost two weeks. I find it difficult to laugh and smile. My friends say it's likely the rain and that I'll feel better when the sun comes out. I certainly hope so. This feeling of hopelessness and despair is bone deep and I feel washed up on a cold lonely shore. Even my love is sad and my memory is weak. I've been late for appointments and having moments of incredibly stupid forgetfulness. To anyone I've offended with my tardiness - I'm sorry.
I'm making a concious effort to find fun and happiness within. Yesterday I used the potting wheel Brent and Solara and Anaya gave me for mothers day. I successfully threw a couple nice pieces. Brent sat with me and we had moments together of creativity and it really helped my mood. Then I snuggled with Anaya all evening and kept her warm and loved.
Sunday, June 13, 2010
Dusk June 13
What is it to truly be alive? Is it the moments between our birth and our death? Gazing through the yard at dusk I see the spidersilks upon the wind blowing to destinations unknown. Sunlight flickers. I see the future a few seconds from now, the silk lands in the grass, the unknown occupants have discovered a new world, where ever they came from.
Arms full of soft sleeping baby, eyes taking in lupins, cedars, buttercups and roses. The children have romped through the buttercups, frazzled and frumpled. Has being trampled in joy hurt the buttercups or enlightened them?
Settling into the evening the fire built is hot and purifying. Is the death of a tree when it is cut down? Or when it is burned and releases it's inner light? Either way the beauty of a tree is only in its nowness. The moments of leaf, stem, swaying trunk, burning endings, all now.
She breathes soft whispers against my breast. I wonder at the plastic tube up her nose. How I'd love for her to be free of it. I have promised to take it out one day. The fire warms her cheek, bright now on my face. I consider thoughts of cremation and wonder where my belief in miracles has dissapeared to. God hasn't been very forthright with answering my prayers. My faith falls like lilac buds after blooming.
Am I failing in some way? Like moths drwn inexorably towards the light - are we not similar? Courting death on a planetary scale. We humans do not value life itself- but only our own. Would you lay down your life to save the life of a shrimp? Me neither. Hell I'd boil it alive and eat it with Garlic butter. Is this wrong? Where is the human guidebook for proper sustainable living on organism earth? Is there a path somewhere within me that will reveal itself?
I'm here, my thoughts float freely, my mind melts into my heart's throbbing ache. If only any of these thoughts had a pointedness that would bring my Anaya back from the line she walks. Where is her mind, her spirit? What baby thoughts has she?
If anything, please let her feel the cocoon of love I weave around her. Please let her know the safety of my arms, the softness of my kiss.
These moments of melancholy love have meaning. Who knows where we will land.
Spidersilks on the breath of life.
Arms full of soft sleeping baby, eyes taking in lupins, cedars, buttercups and roses. The children have romped through the buttercups, frazzled and frumpled. Has being trampled in joy hurt the buttercups or enlightened them?
Settling into the evening the fire built is hot and purifying. Is the death of a tree when it is cut down? Or when it is burned and releases it's inner light? Either way the beauty of a tree is only in its nowness. The moments of leaf, stem, swaying trunk, burning endings, all now.
She breathes soft whispers against my breast. I wonder at the plastic tube up her nose. How I'd love for her to be free of it. I have promised to take it out one day. The fire warms her cheek, bright now on my face. I consider thoughts of cremation and wonder where my belief in miracles has dissapeared to. God hasn't been very forthright with answering my prayers. My faith falls like lilac buds after blooming.
Am I failing in some way? Like moths drwn inexorably towards the light - are we not similar? Courting death on a planetary scale. We humans do not value life itself- but only our own. Would you lay down your life to save the life of a shrimp? Me neither. Hell I'd boil it alive and eat it with Garlic butter. Is this wrong? Where is the human guidebook for proper sustainable living on organism earth? Is there a path somewhere within me that will reveal itself?
I'm here, my thoughts float freely, my mind melts into my heart's throbbing ache. If only any of these thoughts had a pointedness that would bring my Anaya back from the line she walks. Where is her mind, her spirit? What baby thoughts has she?
If anything, please let her feel the cocoon of love I weave around her. Please let her know the safety of my arms, the softness of my kiss.
These moments of melancholy love have meaning. Who knows where we will land.
Spidersilks on the breath of life.
Friday, June 11, 2010
Friday June 11, 2010
It hasn't been a week of writing for me. The endless rain has Anaya and I bunkered down at home, awaiting the return of the sun. My older daughter, Solara, had a birthday party last week that had 12 children playing outside in the pond in the pouring rain. That looked fun. Anaya and I watched from the window.
Today is the day of the fundraiser Gala and we are going to get ready to go outside and pick wildflowers for table centerpieces.
I really hope to see some of our blog readers at the event!
Love to all of you,
Camara and Anaya
Today is the day of the fundraiser Gala and we are going to get ready to go outside and pick wildflowers for table centerpieces.
I really hope to see some of our blog readers at the event!
Love to all of you,
Camara and Anaya
Wednesday, June 9, 2010
Wednesday June 9, 2010
Sometimes life gives you a bowl of cherries. Sometimes life gives you lemons. I'm trying to make cherry lemonade. :)
Friday, June 4, 2010
Friday June 4, 2010
This week has been a hard one for me emotionally. Anaya has been very sleepy and having breathing interruptions or apnea episodes that are longer than they used to be. I fear that she will become more and more sleepy and never wake up. I suppose if one has to go - going in your sleep would be the best way. It's just that I'll miss her so much.
Any parent that has ever loved a baby knows the feeling. The feeling where you just wanna snuggle them up and kiss their cheeks and protect them from the world. The way a baby sleeping conforms to the curve of your arms like...well I don't know what to compare it to. The way they sigh in their sleep and suckle on imaginary breasts in their dreams. This love is a sweet feeling, one that opens up the heart in it's splendor. Similar to the most beautiful sunrise you've ever seen - and never wanted to end.
For me this sweet love is amplified by my sadness. My sunrise has rainbows of many colors. Anaya teaches me how much emotion I can hold in my heart all at once.
So I will try to let go of the overwhelmingness of it all and simply feel this rainbow of emotion while I hold my sleeping love close to my heart.
Thursday, June 3, 2010
Thursday June 3, 2010
The picture above is of Anaya with her first hairdo! I put her golden hair into little tufted pigtails :)
Anaya is very sleepy today. She's been sleeping since bedtime last night. I awoke her this morning to change her diaper and started feeding her, at which point she fell back asleep. I feel as though the sleep is healing for her, and that it is what she needs. I'm going to try putting her in the stroller and taking her for a walk. Perhaps she will awaken to the nature around her.
Last night I added a button to the blog so that people can buy their gala tickets right here via paypal. The Prestige is quite adamant that they need to have tickets sold in advance in order to continue with the event. I know that a lot of people are planning on coming, they just haven't bought tickets yet. So if you are one of those people planning to attend but have not got a ticket yet please do so really soon - there are three ways to get your ticket. You can buy one with paypal up in the right hand corner of this blog, you can go to the front desk of the Prestige Inn, or you can call Tom and he'll deliver them to you. His number is 250-505-0275.
Anaya and I really hope to see you there.
Tuesday, June 1, 2010
Tuesday June 1, 2010
Anaya has been doing really great in some ways lately. The new medicine called scopalamine, which is to dry up extra saliva and mucous, is really working. There have been fewer choking episodes. I haven't had to suction her in almost a week. This is fantastic. The side effect of the medicine is that she is a bit extra drowsy, but it seems to be wearing down a bit. We were told that the drowsiness will eventually cease.
One of the things that concerns me about Anaya lately is her breathing pattern. As she is falling asleep she has gaps or apneas in her breathing which last sometimes 30 seconds. Eventually, as she falls into a deeper sleep, her breath settles into a more regular pattern. I just get the shivers every time she stops breathing. Usually I give her little chest a rub and encourage her to take a deep breath, which she does quite loudly and sometimes starts crying. I think the feeling of anxiety that she gets when she doesn't quite get enough oxygen really frightens her.
Our Nurse, Joanne, has been with us now for 6 weeks. She is an amazing blessing and I can't imagine this journey without her. She has a very grounded and aware presence. She is so patient and gentle with Anaya. I trust her with Anaya's life. I trust her with Anaya's death.
You may ask "What does she mean when she says she trusts her with Anaya's death?" What I mean is that if I were not present and Anaya were to pass away in Joannes presence I would not feel guilty. I would know that she was well taken care of and properly guided gently through the door of our transition into the unknown. Joanne is spiritual in the same way that I am. Her soul is rooted in her body and when you look into her eyes you know that she's "All here". I have seldom met someone who is so consistantly present and true to herself. She always communicates her viewpoint very clearly, and gets me to re-evaluate my thinking and helps me stay grounded into the moment.
We are so blessed to have her.
Yesterday was my eldest daughters birthday, she turned 8. She had a really great day. She seems very happy. As she kissed Anaya goodnight, I sang her happy birthday. It was a moment for the three of us. Kissing Anaya is like putting your lips to the softest cheek in the world. She is so angelic and it seems to radiate outwards in her beauty and softness. The golden hair on her head is soft like strands of silk. Her eyelashes are long and curly, even her scent is sweet and ethereal. MMMmmm smell of baby.
When Solara kissed Anaya goodnight I couldn't help but think that Anaya's presence on Solara's birthday was one of her most cherished gifts.
Friday, May 28, 2010
May 28, 2010
I am submitting this article to local papers today.
Fundraiser supports testing, disease treatable
By Camara Cassin
Baby Anaya Cassin-Potts, first written about in March, has now been given a diagnosis of Infantile Krabbe Leukodystrophy. This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy.
The outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and life expectancy is less than 2 years.
The saddest part about this disease is that once symptoms are present it is untreatable. Krabbe can be tested for at birth and treated with an umbilical cord blood transfusion that contains the healthy stem cells of another baby. These stem cells make their way to the brain and produce the enzyme that is required. Children who receive this treatment continue to develop and have a much higher quality of life and a longer life expectancy.
British Columbia does not test babies for Krabbe Leukodystrophy at birth. In some states in the USA testing for Krabbe is routine. Anaya’s parents are working to put together a fund for Nelson parents at the Kootenay Lake Hospital who would like to have their newborn screened for this disease with a simple heel poke. Each test must be sent to a special lab and paid for independently. To accomplish this they are holding a Gala Dinner and Dance Fundraiser at the Prestige Inn on June 11, 2010. Proceeds will also go to the Hunters Hope Foundation which conducts research, and to the family to help with expenses. Tickets are available at the Prestige or by calling 250-505-0275.
.
Fundraiser supports testing, disease treatable
By Camara Cassin
Baby Anaya Cassin-Potts, first written about in March, has now been given a diagnosis of Infantile Krabbe Leukodystrophy. This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy.The outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and life expectancy is less than 2 years.
The saddest part about this disease is that once symptoms are present it is untreatable. Krabbe can be tested for at birth and treated with an umbilical cord blood transfusion that contains the healthy stem cells of another baby. These stem cells make their way to the brain and produce the enzyme that is required. Children who receive this treatment continue to develop and have a much higher quality of life and a longer life expectancy.
British Columbia does not test babies for Krabbe Leukodystrophy at birth. In some states in the USA testing for Krabbe is routine. Anaya’s parents are working to put together a fund for Nelson parents at the Kootenay Lake Hospital who would like to have their newborn screened for this disease with a simple heel poke. Each test must be sent to a special lab and paid for independently. To accomplish this they are holding a Gala Dinner and Dance Fundraiser at the Prestige Inn on June 11, 2010. Proceeds will also go to the Hunters Hope Foundation which conducts research, and to the family to help with expenses. Tickets are available at the Prestige or by calling 250-505-0275.
.
Tuesday, May 25, 2010
Baby Baby Mine
Baby, baby mine
who's only here for a time
I've been waiting
for someone like you
needed a teacher
to show me the truth
and I've found her
in the mirror that is you.
Baby, baby mine
you're like the stars that shine
so beautiful,
and so far away
the sun is shining
shining down on you
and baby, baby mine
this love's what's true
And when the night gets cold,
and the darkness is too thick
I will surround you with my love
and bring you light
and when you're on your own
know you are here inside my heart
I will bear you up with love
into the light
baby, baby mine
only here for a time
who's only here for a time
I've been waiting
for someone like you
needed a teacher
to show me the truth
and I've found her
in the mirror that is you.
Baby, baby mine
you're like the stars that shine
so beautiful,
and so far away
the sun is shining
shining down on you
and baby, baby mine
this love's what's true
And when the night gets cold,
and the darkness is too thick
I will surround you with my love
and bring you light
and when you're on your own
know you are here inside my heart
I will bear you up with love
into the light
baby, baby mine
only here for a time
Saturday, May 22, 2010
I can't go on, I'll go on
I had an anxiety attack yesterday.
It started at a cafe where I was waiting with Anaya for Brent to finish an appointment. It happened that I sat next to a girl I know who has lost her children to the ministry because of her lifestyle choices. I try to practice compassion and non-judgement but I couldn't help getting angry. Angry with God, angry with her, angry with the world. I wanted to scream out loud how unfair it is that MY baby, who was so wanted and so well taken care of, is fading away. How lucky this woman is, to have healthy babies, and it seems she doesn't care enough to be there for them.
While these thoughts were going through my head Anaya started crying, then she started choking. Everyone in the cafe was looking in our direction. I helped Anaya through her spell and got up, paid the bill and left.
I felt an incredible sadness descend upon me. It settled about my shoulders and my heart like a cold fog. I shivered and tears spilled from my eyes and ran down my cheeks, falling on her golden head like raindrops. Wrapping my arms about my little love, we continued on down the street. I wished we had known when she was born that she was sick. She looked so perfect. There was no reason to suspect. Our moments turned into minutes, days, months, and now we are 8 months past the time when a stem cell transplant would have saved my daughters life. Would she have crawled by now? Would her little giggle resound through the house? Would her first word be Mama?
We could have found out with a simple blood test. We are want to provide the means for future parents to get this test if they want it at the nelson hospital. It's the same heel prick that they do for the usual newborn tests. We could have helped her but now it's too late for that treatment.
The tears kept falling, the anger building into frustration, my sobs bubbled out of my chest like unwilling prisoners. I felt nauseated and trapped, wanting to run, to scream and kick, wanting to fly out of my body. I wanted a healthy baby.
I met up with Brent and we went to the pharmacy to get Anaya's meds. I sat down on a chair and buried my face in her golden hair. She slept peacefully, my heart hammered against my chest and I wondered if I was going to have a heart attack. The anxiety of all my fears and grief and anger gripped me and I wondered if it would kill me. That made me laugh at my own thoughts. How ridiculous! I realized I was having an anxiety attack and forced myself to slouch into the chair and focus on cuddling the baby. I felt her breathing, her warm, trusting little beingness. I felt my own breath and slowed it down to match hers, I felt my body in the chair. I felt the air moving through my nostrils.
I began to feel my love for her radiating towards me, mirrored in the eyes of the people watching me cuddle the baby. A warmness embraced me and my heart slowed, the nausea faded and the anger disappeared. I realized that I will go on giving her more. All of me cares, all of me finds joy in her. I would not trade this journey for another. She's a keeper, if only I could keep her.
The impermanence of all life is what makes it beautiful and wondrous. Even when I can't go on, I'll go on.
It started at a cafe where I was waiting with Anaya for Brent to finish an appointment. It happened that I sat next to a girl I know who has lost her children to the ministry because of her lifestyle choices. I try to practice compassion and non-judgement but I couldn't help getting angry. Angry with God, angry with her, angry with the world. I wanted to scream out loud how unfair it is that MY baby, who was so wanted and so well taken care of, is fading away. How lucky this woman is, to have healthy babies, and it seems she doesn't care enough to be there for them.
While these thoughts were going through my head Anaya started crying, then she started choking. Everyone in the cafe was looking in our direction. I helped Anaya through her spell and got up, paid the bill and left.
I felt an incredible sadness descend upon me. It settled about my shoulders and my heart like a cold fog. I shivered and tears spilled from my eyes and ran down my cheeks, falling on her golden head like raindrops. Wrapping my arms about my little love, we continued on down the street. I wished we had known when she was born that she was sick. She looked so perfect. There was no reason to suspect. Our moments turned into minutes, days, months, and now we are 8 months past the time when a stem cell transplant would have saved my daughters life. Would she have crawled by now? Would her little giggle resound through the house? Would her first word be Mama?
We could have found out with a simple blood test. We are want to provide the means for future parents to get this test if they want it at the nelson hospital. It's the same heel prick that they do for the usual newborn tests. We could have helped her but now it's too late for that treatment.
The tears kept falling, the anger building into frustration, my sobs bubbled out of my chest like unwilling prisoners. I felt nauseated and trapped, wanting to run, to scream and kick, wanting to fly out of my body. I wanted a healthy baby.
I met up with Brent and we went to the pharmacy to get Anaya's meds. I sat down on a chair and buried my face in her golden hair. She slept peacefully, my heart hammered against my chest and I wondered if I was going to have a heart attack. The anxiety of all my fears and grief and anger gripped me and I wondered if it would kill me. That made me laugh at my own thoughts. How ridiculous! I realized I was having an anxiety attack and forced myself to slouch into the chair and focus on cuddling the baby. I felt her breathing, her warm, trusting little beingness. I felt my own breath and slowed it down to match hers, I felt my body in the chair. I felt the air moving through my nostrils.
I began to feel my love for her radiating towards me, mirrored in the eyes of the people watching me cuddle the baby. A warmness embraced me and my heart slowed, the nausea faded and the anger disappeared. I realized that I will go on giving her more. All of me cares, all of me finds joy in her. I would not trade this journey for another. She's a keeper, if only I could keep her.
The impermanence of all life is what makes it beautiful and wondrous. Even when I can't go on, I'll go on.
Wednesday, May 19, 2010
Wednesday May 19, 2010
Brent and I just finished changing Anaya's feeding tube. It was not a pleasant experience. It must be incredibly uncomfortable. But now it's done. It is placed properly through her nose into the stomach and is taped neatly on her cheek. I hope she can forgive me these pains and discomforts that I cause in my efforts to care for her.
Solara helped to feed Anaya yesterday. She is an awesome big sister in this situation.
I'm exhausted this evening and I think I'm going to finish up feeding the baby and head to bed early.
Monday, May 17, 2010
Monday May 17, 2010
Anaya spent the day with her Nurse, Joanne, today. It is the first time I have gone to town without her. I needed to pick up a prescription, some diapers and breast milk. On the way I stopped and had lunch with Anaya's dad, Brent. It was like a first date. We are hardly ever alone together. It felt new and weird to be without our "little bird".
I had time today to think about what I may do with myself in the future. I think we may foster children that have special needs, or that are sick with degenerative diseases. I have been learning so much about caring for a special child, both physically and emotionally. I feel as though it is incredibly important that these children get the love and care they need. I think I'd be good at that. Anaya is training me well.
Upon returning home I was informed that Anaya had an excellent day. She was not too upset to stay with Joanne, which is a new thing. We have a new medicine called scopalomine, which helps to dry up her mucous. It really seems to work, although it sedates her slightly. It's so nice to not have to suction her so often. She really dislikes it. It makes her choke and gag and turn bluish. It's awful.
I've been talking to Autumn and Tom today, who are coordinating the next fundraiser on June 11. There has been interest in knowing more about Anaya's disease and the Hunters Hope Krabbe Leukodystrophy Foundation that we are contributing to. Please check out their website at www.huntershope.org
Here is an excerpt from their site.
"KRABBE DISEASE
Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems.
Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire.
When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.
Krabbe Disease has four phenotypes: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid and death occurs in early childhood in the infantile types.
One in 100,000 live births in North America are afflicted with Krabbe Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. Yet, awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.
Now, a new and revolutionary treatment, Cord Blood Transplant is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders."
The babies must be tested for the disease at birth and treated right away. It is too late for Anaya to have this treatment. We hope to set up a fund for Nelson parents who wish to have their baby tested for this disease as it is not currently done here.
I had time today to think about what I may do with myself in the future. I think we may foster children that have special needs, or that are sick with degenerative diseases. I have been learning so much about caring for a special child, both physically and emotionally. I feel as though it is incredibly important that these children get the love and care they need. I think I'd be good at that. Anaya is training me well.
Upon returning home I was informed that Anaya had an excellent day. She was not too upset to stay with Joanne, which is a new thing. We have a new medicine called scopalomine, which helps to dry up her mucous. It really seems to work, although it sedates her slightly. It's so nice to not have to suction her so often. She really dislikes it. It makes her choke and gag and turn bluish. It's awful.
I've been talking to Autumn and Tom today, who are coordinating the next fundraiser on June 11. There has been interest in knowing more about Anaya's disease and the Hunters Hope Krabbe Leukodystrophy Foundation that we are contributing to. Please check out their website at www.huntershope.org
Here is an excerpt from their site.
"KRABBE DISEASE
Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems.
Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire.
When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.
Krabbe Disease has four phenotypes: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid and death occurs in early childhood in the infantile types.
One in 100,000 live births in North America are afflicted with Krabbe Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. Yet, awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.
Now, a new and revolutionary treatment, Cord Blood Transplant is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders."
The babies must be tested for the disease at birth and treated right away. It is too late for Anaya to have this treatment. We hope to set up a fund for Nelson parents who wish to have their baby tested for this disease as it is not currently done here.
Subscribe to:
Posts (Atom)