Wacky Wednesday

I find myself at a crossroads, panic stricken, not knowing which way to go first. I've been with Anaya all morning. She awoke choking, screaming with the intensity of clearing her throat. The medicines we give her to control her secretions seem to be losing their effect and she has been so wet. The suction machine is our constant companion, and we often have to empty the canister several times a day. Brent was here to help me this morning and we started by giving her atropine to dry her up.

Preparing to visit my friend Ellen (who lost her beautiful son Sebastian a while back), I dressed Anaya in a beautiful white dress. The atropine kicked in and she dried up. She also became a bit sleepy, which is an unfortunate side effect of the atropine. Nurse D showed up and we walked Anaya down to the OSO Negro. A fabulous garden orientated Nelson Coffee Cafe.






Pulling my strength around my being I stood a bit taller and pushed Anaya through the throng of people. Everyone is curious. Everyone looks at Anaya. Everyone looks at me. I smile and stand in line with Ellen and Nurse D. There always seems to be the lingering question in the air, just hanging around us.

What's wrong with her? What's wrong with her? What's wrong with her?

It echos in the stillness that swirls around us as people stop conversing to look.

Curiosity, judgement, observance. I wonder what it would be like if everyone could feel each others emotions. Anaya certainly reacts to people's feelings. In fact I have found that she often has a harder time around large groups of people. By harder time, I mean a harder time breathing. Standing in line just then she began yawning, her lips turning dusky and then purple. I bent towards her head, lowered my lips to hers and gave her a small puff of air. She sighed and regained her rhythm, returning to pink. Intent on her I watch her chest rise and fall, listen to her sounds and smell her sweet baby scent.
"Excuse me." I hear a woman call, "would you like to order?"
I had forgotten that I was at the head of the line. "Yes please, I'll have an iced coffee please, and an breakfast muffin." I fumbled my wallet out of my purse, dropping receipts, and a hair clip onto the ground. Bending to get them my back tightens and I am reminded that I need to stretch it more.





Taking Anaya out to sit in the garden with Nurse D and Ellen I am approached by a beautiful little girl who looks at my baby with pure innocence and curiosity. Her mom speaks to me with kind regard, and I am touched by their presence in the moment. I hope to see them again.

My back tightens again as I sit down and suddenly I know with a certainty that I have to move. Literally. I need a new place to live. Carrying Anaya up and down the stairs in my house




has become dangerous - the nurses are not allowed to do it and therefore I have to. The nurses are also not allowed to bathe her in the bathtub because it might hurt their backs, so I do it. I love bathing with her. It's just so awkward getting her in and out. She's slippery like an oily noodle wrapped loosely around a spoon. One of my biggest fears is having her slide out of my arms and that when I try to catch her from falling, I grab her arms and dislocate her shoulders. It's a very frightening thought for me. I never want to cause my angel pain.

Sitting in the partial shade at OSO I realized that I need to start looking for a place that is wheel chair accessible and that has a handicap bathroom with room for a special table, tub and lift. I know in my heart that Anaya will be here for a while and that we need to accommodate for her needs. I decided then and there that I would start working on it today.

So we walked down to the Nelson Cares Society - which is supposed to know about accessible housing. I found out that they do not provide services to children and I was given a number to call. I was also told that finding housing in Nelson suitable for a child with special needs like Anaya's is next to impossible.

That's when the panic attack hit me. I called the number. The voicemail box you have reached no longer exists. Holy Shit. The heat hit me, my heart constricted and Anaya started turning dusky again. Pushing down my panic I give her another puff of air and ask the woman behind the desk for some water. Pulling out the small syringe I carry in my purse I gave Anaya a drop of water on her tongue. It seemed to refresh her. One drop at a time. Cool water...life giving water....one drop at a time.
I drank a glass too. Deep breath. A thought comes to me from out of nowhere.

Maybe there's something somewhere. Maybe if I get the word out there will be someone who knows of a place. Maybe if nothing exists for Anaya now, it could be built. We need a level space with either an elevator or a ramp, with full bathroom and bedrooms on the main floor. It needs to have a minimum of two bedrooms, with the optimal number being three. There needs to be a large handicapped bathroom that has room for a lift or a special bathtub.


Ok. Now I need help finding it. Readers, any suggestions?

Canada Day Weekend

Last weekend passed like a blur.  A close friend of mine came to visit from Calgary and we went to the Canada Day festivities at Lakeside Park.  Brent cared for Anaya and Sylvie and I went for a while alone - later joined by Brent and Anaya for the Fireworks.

Somehow this weekend has altered my life perspective to my very core.  I feel as though I have been selfish and fearful.  Lost and desperate.  I realize that I have been attempting to escape my grief, escape my situation, by burying myself in "important tasks" like trying to raise money for me to stay home with Anaya, doing work on my computer - networking, grant writing, researching - BUSY BUSY BUSY.  I've also been seeking love outside of myself, trying to attract a new man, a SUPERMAN, that would somehow rescue me from everything and save the day.  Someone who could rescue me from my grief, my despair, my fear. A person who would know what to do in every situation and solve my problems.  I've realized that this Superman does not exist.

I've also realized that the last thing I need right now is Superman.  I've hit rock bottom within myself.  I have abandoned some of my core beliefs and values because I have felt as though my very reality has been crushed.  I've taken every negative word to heart, taken personally the fact that I am not able to save my daughter, and am therefore not a good parent, not a good mother, not a good friend, not a good wife, child or grandchild.  Pretty much a lost human being.  Down at the bottom of my rocky self I found something worth saving, something worth more than anything, my desire for love, peace, justice and harmony in the world.  The core of every one of us is pure love.  It gets bashed, buried and graffitied - but it's there.

Looking at Anaya the pure love radiates through me, it burns away the negativity, it reveals to me that my fear is a waste of life.  That I need to choose love.  I need to stop being afraid.  Everyday I just want to be with her, learning, meditating, bathing her, walking her, reading to her.  Yet everyday I have found myself creating a life OUTSIDE of Anaya.  Hiding, escaping, refusing to learn from my teacher, refusing to face the dying - the death - the life.  All of it.

I'm ready now to face it.  I'm ready to be my own Superwoman.  I'm ready to go deep into my emotional turmoil with Brent and create a true and real friendship.  I am ready to face my own selfishness and embarrasment.  I've been hiding my feelings behind a wall that looks like strength to some people but really it is my attempt to control my world, and create some kind of normalcy.  The fact is that this is not a normal situation.  The truth is that I'm not strong.  I am completely devastated that Anaya has become little more than a beautiful living doll.  I'm sick with longing for her to get better.  I hate myself for not being able to do anything about it.  I wish I had some magic power within me that would HEAL her.  I get lost in my despair sometimes which is why I build the walls around the pain that look like strength.  Lest I drown in the enormity of it.

Moments of Joy with Anaya are sweeter when I allow myself to be REAL.  To feel my sadness, be one with my love, allow my mind to relax and let go of the fear and anxiety I feel about "making it" in the world.  I have so much fear about "making it" in the world.  What is it to be a success?  Does it mean I need to leave Anaya alone with a nurse and go to work all day?  Will that make me a better person?  It's not what my heart wants. I just want to be with Anaya.  I want to experience her lifetime with her.  All we have is precious time - and I've allowed so much of it to waste away.

I don't even know if it's right for me to be asking people for money to help me stay home with Anaya. But that's what I've been doing. Perhaps it would be more integral for me to move into subsidized housing -with disability access and claim welfare.  Then I could spend my time with Anaya actually BEING with her instead of trying to always find a way to pay the bills and save for Anaya's special needs.  She's my baby.  My sweet innocent little baby girl who had a smile that made my heart soar and my soul sing.  She's still in there, her beautiful soul, - in that little  fragile body.

She still knows me.  She hears my voice and responds, she breathes easier when I hold her.  She sighs with love and contentment and I know that she needs me.

I know that our time is falling away like sand in an hour glass. I won't be lost anymore.

Rainbow Spinners!

Once upon a time there was a little girl named Anaya who lived inside a yellow house on the side of a mountain in the City of Nelson BC. This little girl was very sick and the doctors said she was "palliative". She could no longer move on purpose, and could not see. Her parents, who loved her so very much, took turns taking care of her.

One day her parents saw some wind spinners outside of a store. There was a little child gazing at them in wonder and pointing up at them. Anaya's Mama decided that they would hang a wind spinner in their tree for their beautiful daughter who will never see it. The rainbow colors made the family so happy that they bought another wind spinner.

"This could become something wonderful!" Thought the little girl's Mama. "People will know this is Anaya's House and they will see the colorful wind spinners and smile and think a happy thought for Anaya. They will send out loving energy to her - and prayers. A little color never hurt! So Anaya's mama asked everyone she knew to hang a ribbon, wind sock or wind spinner from Anaya's Rainbow Tree to make it really stand out.

Lots of Mama's Facebook friends wanted to bring a spinner but they were far far away. So Mama built a webpage where friends from near and far away can buy a gift for Anaya's Garden, or something to hang in the Rainbow Tree.



A wonderful lady from our Facebook Group had a great idea to have a "Spinners" day, today June 30, where we encourage Anaya's fans to buy her and Solara and ornament to add to the garden. Our yard is quite an awareness campaign. People stop and look at it, children laugh and point, old couples hold hands while standing and gazing at Anaya's rainbow tree.

Our rainbow house is REALLY making an impact on the people of Nelson BC.

Often if someone asks where I live I say "You know the house with the rainbow spinners up on Hall Mines Rd?" and their eyes widen, they smile and exclaim "I know that house!"

Our goal to make people smile, make people happy and surround our home with positive energy and love is really working! I believe that incredible energy is helping Anaya, and raising awareness about Anaya's life and her struggle, but also about the joy to be found in life - and NOT to be forgotten!

Please consider spending between $4 - $30 today in our Rainbow Spinners Campaign by visiting http://healinganaya.com/gifts.html and adding another rainbow to the garden :)

Thank you,
Camara (Anaya's Mama)

Anaya's Rainbows

After our daily walk we paused for a photo in front of our Rainbow House.




-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Location:Nelson BC

Elaina

A girl with Leukodystrophy that I grew to love through our online leukodystrophy group passed away on Friday morning. Elaina's mom Gabi was always posting quotes about how being the mother of a special needs child made her a better, stronger, deeper human being. They always made my day.
I dedicate this one I wrote for Anaya to Elaina:

I am the mother of a child with special needs.
Everyday I see life through the eyes of blind,
the unmoving and the mute. Everyday I experience
more of life than most people with five senses.
Every day she loves me is worth a lifetime of experiences.
I wouldn't trade her for a healthy child
Because she is exactly what I needed
She is my teacher in this life
My child with special needs.

So much love to Gabi and Family.
There is a Balloon Release for Elaina on Saturday at 3pm Eastern time. Anaya and I will be sending something special up for Miss Elaina. The girl with the beautiful smile and the incredible hair!

Dan from Edge Roofing puts up giant windsock!

Rainbow house

Today we are getting ready for our house warming. Anaya seems to feel the happy bustling energy around her. Sitting here with her now, I tell her we need the sun to come out. I hope we have a good turn out tomorrow. Only 6 people have confirmed :(

Anaya's been having little tremors and seizes today but they're not too bad. I hope they are not painful for her.


Another day in paradise, another moment with my little love. Forever embedded in my heart.

Location:Nelson

Cat Sent From God?

Today a tail-less disfigured kitty invited herself into our house. She ignored the dog, instantly coming to snuggle me and Anaya. She keeps changing position on Anaya's legs.


It's like she's meant to be here. I've never felt such pure love radiating from a being like this cat. Unreal. Anaya's eyes widened and I felt her bliss when touching the kitty's fur.


I think she's adopted us. I hope she doesn't belong to someone else. I keep putting her outside but she won't leave.



If you happen to know this cat please let me know! If you are looking for her, contact me. She won't leave! (we'd love for her to stay)

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Location:Silica St,Nelson,Canada

Fathers Day 2011

Fathers day 2011
Written by Brent Potts







This new life I have made still seems like a dream to me. I often awake and wonder where I am. I soon remember my present reality, the past is now like a glimpse through a looking glass at a different world.

Today my fathers day started with Anaya telling me she was wet and needed a new diaper. It's amazing she can communicate so well and still be fully asleep.

Camara and i are trying to be good friends so when she needed a place to stay while her house was being ozonated this weekend, I offered my humble accommodations. I don't have much space so it was a little awkward.

This morning we all got up and went to Baker street grill for a fantastic brunch filling us all to the brim. We went back to my house, and I put Anaya down for a nap. As I lay with her I talk and I tell her about my new dreams and how in some strange way I have sabotaged my chances at love. I am so thankful Anaya will not ever be challenged by the negative imprints i was taught without knowing from my childhood.

When I look at my childhood I remember bits and pieces of good mixed up with the broken. A lot of it was tough So in some way I must feel like I don't deserve happiness because I seem to sabotage my relationships just when I seem to have it all. It is a shame this time mostly for the children involved.

Anaya seems to have this quiet wisdom to her for she is always listening for everything the world has to offer. I hope to learn more from her every day and I hope that I can properly guide or go with her where she wishes to go. I always forgot that where Solara was involved and I wish I had remembered.
I am sorry Solara .

After a good nap we return to Camara's home with all the baby stuff. I thought Anaya's first stay at my house was successful. I am exited to try again next week.

One of the most important lessons i have relearned recently is to not to take things personally. I have noticed it makes a remarkable difference when applied to almost any situation.

To every father out there enjoy this celebratory day as if it was your last I certainly did! thank you Anaya, Camara and Buddha for the best fathers day ever!

Location:Hall Mines Rd,Nelson,Canada

Good Morning!

Waking up I open my eyes to her little face smooshed into the pillow. Her lips are nice and red today. It means she's breathing well and getting good O2. She's really sleeping deeply and her eyes move in REM. I wonder what she dreams about.

I myself have been having nightmares of men with shotguns... Very disturbing. But last night I didn't, it might be because my friend April blessed our room yesterday :)

Anaya and I are going to plan a housewarming potluck today for next week...

And I'm going to start working on her birthday party for August. I think we need to have a huge fancy shindig! I'm going to need help in Nelson with this one... We need a venue, good music artists... Suggestions welcome. I'm going to start a Facebook group for organizing that event to keep everything, and everyone organized in one place!!

I'm excited! I believe she's going to make it far beyond her second birthday. She still has so many lessons to teach, people to inspire, lives to change :)

Location:Nelson

My Hero Lisa's Story

A girl's life is shaped by sister's death

North Shore News

By Jessica Barrett

 

Lisa and Frank Fedorak had long dreamed of becoming parents.

"I always told Frank I wanted to have six kids," chirps Lisa, a striking woman with bright blue eyes that contrast her dark hair.

Strolling down Lonsdale Avenue in the tentative warmth of a spring breeze, the 38-year-old North Shore resident appears well on her way to building the happy, healthy family she envisioned. Lisa has those preternatural multi-tasking skills unique to parents with young children. She seamlessly maintains conversation while pushing three-month-old Greta in a stroller and keeping close watch over the downy-haired preschooler darting across the sidewalk.

"She could do this all day," she says, nodding toward daughter Scarlett, clad in a pink coat embellished with the occasional iridescent sequin. "As long as she can run, she's happy."

Watching Scarlett scamper along the pavement, you wouldn't think the rambunctious little girl was any different from other children her age -- unless you looked closely and noted the thin scar just above her collarbone. It's virtually the only outward sign that, at just 3* years old, Scarlett has defied overwhelming odds and seems to be winning the fight of her short life.

Scarlett has Krabbe disease (globoid cell leukodystrophy), a rare degenerative condition affecting only an estimated one in 100,000 births in North America and Europe.

Though rare, Krabbe (pronounced krab-EH) is a particularly cruel and rapidly progressing disease afflicting one in four children in families where both parents carry an uncommon genetic mutation. There is a 25 per cent chance children of such couples will be unaffected and a 50 per cent chance they will be asymptomatic carriers like their parents -- that's the case with Scarlett's little sister, Greta.

Children born with Krabbe lack a crucial enzyme known as galactosylceramidase, or GALC. Without the enzyme, the body begins breaking down myelin -- the fatty substance that insulates nerve fibres and brain cells -- damaging the peripheral and central nervous systems. As the disease progresses, toxins build up in brain and nerve cells, causing seizures, loss of motor skills, blindness, deafness and, typically, death before age two.

Lisa and Frank know the heartbreak of Krabbe well. Scarlett, though their oldest child, is not their first.

Chloe Isabel Fedorak was born Feb. 5, 2001. Lisa and Frank immediately fell in love with their daughter and relished every developmental milestone. At three weeks Chloe held up her head, at one month she was smiling and at two months their first-born was sleeping through the night. But as Chloe got older, her development stalled.

"She started regressing," remembers Frank, 37, on the phone from his job at a provincial court registry. "She was able to hold her head up and then she started not being able to hold her head. We just thought she had a virus or something, but the doctor said babies don't lose skills. Ever."

A visit to a neurologist confirmed every parent's worst fear: there was definitely something wrong with Chloe. Krabbe, a fatal disease, was the most likely diagnosis.

Distraught, the Fedorak's sought information on the condition they had never heard of and had no idea they carried. "It was probably one of the worst days of my life," Frank says. "We took out a book on diseases and found Krabbe and it just said death, death, death all over it."

In their research, the Fedorak's found that there was only one treatment available for Krabbe -- a risky and invasive procedure called a cord blood stem cell transplant. The procedure worked by engrafting blood cells taken from the umbilical cord of a non-related baby into a Krabbe-affected infant.

But further heartbreak followed when they realized that, at just seven months, the damage to Chloe's nerve cells was irreversible. She was not a candidate for transplant.

"It's different for every child, but the rule of thumb is that if you don't know beforehand, it's almost too late," Frank explains.

The reality was stark: there was nothing they could do for Chloe that could bring back her smile, her appetite, her ability to discover the world. All they could offer her was palliative care and watch her slowly slip away. Chloe died on Dec. 2, 2002. She was 22 months old.

The pain was immense. They had lost their first child and their chance at having a family, or so it seemed.

"After Chloe passed away, I never wanted to go through that again," says Lisa. "I said, 'We'll just have to be without kids,' because all the alternatives seemed horrendous -- like I just couldn't go through that."

Years later, however, the Fedorak's learned they were expecting another baby girl affected by Krabbe.

The decision to conceive naturally was one the couple arrived at after exhausting several other options. Artificial insemination proved unsuccessful, and adoption too expensive. It was Frank who made the case to try for another baby. "I pretty much decided that 75 per cent was better than 25 per cent -- because that's the chance of it happening again."

The way Lisa remembers it, they weren't really trying to conceive, but they weren't trying not to. Being open to another baby was one way of working through the pain of losing Chloe.

"Grief is a funny beast," she explains, "I said that I never wanted to go through this and I didn't want to have another child because I didn't want to put another baby through that. . . . I wanted a baby more than anything and at the same time I knew what we were facing. Sometimes you just let go. You let things happen, you let the moment carry you away and it leads to where you weren't expecting to go."

They took the gamble and found themselves once more on the wrong side of the genetic lottery, but thanks to the lessons learned through Chloe's illness and death this little girl had a fighting chance. Still, it didn't make Scarlett's diagnosis any easier to handle.

"Losing my first daughter, that was horrendous, I wouldn't wish that on anybody," Lisa says. "But hearing that diagnosis for the second time, that was hard -- like my heart had been ripped out of my body."

The couple now had to make a difficult decision. There were only three options for Scarlett: terminate the pregnancy, let the disease run its terrible course, or subject her to a risky treatment with no guaranteed results.

After a great deal of soul searching and deliberating, they opted for the transplant. Frank was sure Scarlett would come through with flying colours. Opposition from doctors who urged them to "really think about it" only made them more resolute.

In hindsight, Frank says, they were probably a little na?ve about the treatment. "At that point, we had thought that the kids from the transplants were doing better than they were," he admits.

It was true that kids were escaping Krabbe's certain death sentence by undergoing the transplant, but the process was, and is, far from perfect. Only about 20 newborns worldwide have been treated for Krabbe through cord blood stem cell transplants. Most have been done at Duke University in North Carolina under the supervision of Dr. Joanne Kurtzberg, an expert in the field.

While successful transplants delay the onset of Krabbe, most recipients show symptoms over time -- largely affecting gross motor skills and impeding the ability to walk. Frank says a lot of the kids who have undergone the procedure use walking aids or wheelchairs. The treatment is so new that the long-term prognosis for transplant recipients is unknown. So far, the oldest recipient, an 11-year-old American boy, is doing well but uses a wheelchair to get around.

To be effective, the transplant must be done almost immediately after birth. This means parents and doctors have to know to look for the condition before a baby is born, or catch it within days after. A handful of American states have included Krabbe in compulsory newborn testing, and at least one baby has undergone the transplant as a result, but in most places, including Canada, there is no screening process.

As a result, most eligible babies come from families with a documented family history of the disease -- meaning the parents have already lost an older child.

Pregnant with Scarlett, the Fedorak's turned to pediatric oncologist Dr. Kirk Schultz at B.C. Children's Hospital and set about preparing for the gruelling treatment that would last nearly a year. Scarlett would be only the second Canadian child with Krabbe to undergo the transplant procedure, the first in British Columbia.

Through in utero testing, Schultz was able to find a suitable donor from an American cord blood bank and was ready to take action at the first opportunity.

"We did a transplant as soon as we could safely do it after Scarlett was born to minimize the amount of damage occurring inside her nerves," Schultz says via phone from the United States while away on business.

Schultz waited 16 days to allow Scarlett's liver to adjust before starting her on high-dose chemotherapy. He needed to destroy her immune system and ready her body to accept new cells containing the crucial enzyme.

Schultz has a good analogy for Krabbe. The absence of GALC, the missing enzyme, creates a sort of traffic jam in the cell. Substances are going in, but they can't get out. "You have a downtown traffic jam and nothing is going out because the stoplight is on," he says. "It's a bigger and bigger traffic jam inside the cell and eventually it just can't work any more. You need the signal to turn the light from red to green." GALC is that signal.

What Krabbe-affected kids really need, Schultz says, are new nerve cells, but the medical science just isn't there yet. Blood cells are the next best thing. "What they do is they go and sit next to the nerve cells, and they make the enzyme alright," he says. "The blood cells produce the enzyme and go outside the blood-making cells and the nerves try to pick them up."

It's not a cure, but it's the best option out there, Schultz says. The key is doing the transplant before babies begin exhibiting symptoms, which is why Chloe could not be treated.

"The enzyme is not working even when the baby is developing inside the mom," Schultz says. "The problem is if you find a child that's already got symptoms, there's so much that's accumulated inside the cell that you can't come back from that."

For the first three months of her life, Scarlett was confined to a tiny hospital room where she received treatment. At just 3.2 kilograms, machines dwarfed her tiny body and a tangled mess of tubes pumped chemo into her neck and chest through central lines. Lisa literally never left the room. Frank still had to go to work, but would visit the hospital every night, staying late into the evening. He'd do it all again the next day.

Bringing Scarlett home, tubes and all, was another terrifying ordeal. "We had to do everything," Frank remembers. "It was just two people, not really experienced in this, making sure that she didn't rip these things out of her chest." Several complications landed Scarlett in the intensive care unit, fighting for survival.

Finally, at one year old, Scarlett was weaned off her myriad medications and the tubes were gone. She began the long struggle for normalcy.

"She had no muscle tone, she hadn't gained back her birth weight at that time," Lisa says, describing Scarlett at one year as about the size of her now three-month-old sister, Greta.

With the help of a physical therapist and a speech therapist from the province's Infant Development Program, Scarlett started gaining strength and muscle control. When she turned three, her support services transferred over to the B.C. Centre for Ability, where she has continued to thrive. Her progress has so impressed staff at the centre, that the organization has honoured her with their Hero of Ability award for 2009.

Although Scarlett continues to have some muscle weakness, she has almost caught up to her peers. She can run, jump and is learning to ride a bicycle. Lisa chalks it up to her sheer will and determination -- personality traits that have not escaped the attention of her therapists and doctors.

Still, Scarlett remains a medical mystery and her future is uncertain. Her annual MRI scans show that there has been damage to her myelin sheath, yet Scarlett shows virtually no signs of her disease. Because of this phenomenon, she'll be featured in a medical study to be published in the coming months.

Dr. Schultz, her oncologist, confirms that Scarlett is doing remarkably well, but stops short of saying she's out of the woods for good. "I have a very cautious optimism," he says. "This is so unusual and rare it is really impossible to say how it will play out down the road, but we do know that what we've done will delay the Krabbe Disease."

For Lisa and Frank, focusing on Scarlett's uncertain future is a waste of time. Rather, the family is concentrating on the next challenge, one they haven't encountered before.

Scarlett is due to start preschool in the next little while. Her parents will have to take a step back and watch their daughter venture into the world on her own two feet.

For more information on the Fedorak's struggle with Krabbe Disease visit www.chloeisabel.com, Lisa Fedorak's personal log of dealing with the disease. More information on Krabbe, newborn testing and cord blood stem cell transplants is available through the Hunter's Hope Foundation www.huntershope.org.

© North Shore News 2009
 




 

Daddy's new house!

Today's nappy pic.

A sick computer...

My laptop is sick and is at the computer doctor. I can't really write from my phone. Anaya is alright. We are pretty content. I'll find a computer and write more once I find one. Monday or wednesday likely...

Misty Kootenay Days

The clouds swirl over the mountain tops. Trees are lost in the white blur, the sky is not blue, but white and grey. Thunder rolls overhead and the sky dumps buckets of water down upon Nelson. The air is crisp and clean. Scents of spring hang in the air. Damp earth, wet grass, dripping lilacs, all combine to form a heady scent of life.

Buddha (our dog) runs before me and I brush a tendril of loose hair from my face that has become plastered to my forehead in the rain. He looks back at me and wags his tail, scampering ahead, hoping this will be a longer walk than just a few blocks.

"I'm sorry buddy" I say. "We've got to go back soon." He looks up at me with his kind, wise brown eyes and I swear he knows what I just said. His ears droop, his tail sags and he puts on his pouty face. We head back.

Walking past homes of those yet met, hosts of unknown families know nothing of me and mine. What I wouldn't give some days to be anonymous. The fact is that I am who I am, and you are who you are, I wouldn't change anything about my life given a choice. Anaya is the best teacher I've had in this life, with her help I have grown into a woman of compassion, confidence and love. It's just that sometimes it's nice to have a conversation with people that isn't about how Anaya is doing. A conversation that is organic, evolved and engaging. Don't get me wrong. I love to talk about my babies too...

Stepping over a black slug I stop and take notice of this fragile, beautiful and destructive creature. It does not notice me and carries forth, slowly. It takes it's time. Sometimes I rush things, especially when I make a decision. Once I've decided to take action - the next step is taking ACTION LOL. Get-er-done is one of my sayings. I love the feeling of accomplishment when something is complete, whole and beautiful in the moment. I am happy to say that Anaya and I are comfortable now in our little house. My friend John has really helped me out over the past couple of weeks with organizing the place, making it functional and beautiful. He's also organized some helpers to give me a hand too - which is wonderful. A young lady named April is my key Angel. I think her and I will be good friends.

I met April at the fundraiser held last week by the Bodhi Spa. The fundraiser was a surprise to me. I knew that Monica was doing a draw for a massage prize but I didn't know that there was an event until a few days before. It was funny. I ran into people downtown Nelson who said "Hey - tell me about your event on Sunday" and I was like "What do you mean? What event on Sunday?" It was kind of awkward but I hadn't been on facebook in a few days and I guess that's what happens when you tune out. I called Monica and she filled me in.

It turned out to be a lovely event. Anaya and I attended with John. We met lots of lovely people who had love in their hearts for Anaya. She was the star of the afternoon. Monica took some lovely shots of her.

I sat and talked with everyone about Anaya. About her illness, about her terminal prognosis, about my feelings on death and dying. All around me was sadness and compassion and love, but the sadness had a weight to it and the grief hit me hard. I attempted to move through it, overcoming the urge to cry and run away. There is no running away from grief. It always catches you. I pretended a smile for a moment...not wanting to cause anyone undue concern. Picking up Anaya I held her head to my lips and breathed in her soft baby smell, feeling the silkiness of her hair on my chin. "I love you sweetheart" I whisper to her and the feeling of love blossoms strongly in my heart. Reminding me all over again that the pain is worth the love.

The years spent with Brent were similar. There was love. There was pain. There was forgiveness and effort, more pain,grief, more love. It seemed a cycle of insanity that eventually caused me only pain. When the pain begins to affect others and affect children the love falls apart. The seams had been splitting for quite a while.

Things are calmer now. My home feel safe and warm, cozy and welcoming. The spring rain has awakened the yard. Lushness envelops us. Buddha and I climb the stairs into the house. Opening the door the scent of cleanliness hits me and I am overwhelmed by gratitude towards the lovely ladies who volunteered time this week to help me maintain our home. The phone is ringing - It's Solara. I talk to her several times each day. She's very happy back in Calgary with her father and her old friends. I love to hear the smile in her voice. I know it was the right thing to do - to have her stay there for a while. But I miss her and my heart aches without her good night hugs.

My little love lays beside me on the couch. She is snuffley tonight - meaning that she cannot seem to breathe through her nose. This makes things difficult for her but I've been suctioning out her mouth and nostrils and it helps a bit. She got to hang out with her Grandma and Grandpa Scott today and her daddy. He has a few days off and has been spending lots of time with her over here. He's been gracious and helpful - bringing the best parts of himself to our fledgling friendship. I hope to bring the best parts of myself too...but mistrust arises and I struggle with it. I do the best I can to be the best parent to Anaya that I can be, the best parent to Solara that I can be.....the best ME I can be!!!

To end I say
"Do not go gently into that good night. Rage, rage against the dying of the light" - Dylan Thomas.

Brent asked me to post this on his behalf.

Now I awake and instantly look over past the empty side of my bed out of habit expecting to see my baby girl listening for someone to wake up , taking in the new day and see the tapestry decorated by a sun . It reminds me of the precious moments I can remember as vividly as if they only happened a moment ago.I cherish the time I have with my wonderful little baby girl. I miss having her near me without the chance of a stolen kiss or a snuggle at my convenience, so now I push on struggling to find my new place in this new world. I strive for my peace I once took for granted.Within my new existence I seek love for myself,my baby girl and the friendship love that's starting all over with camara. I am fortunate to still have that yet it has been hard to have your closest friend hold you at a distAnce to protect their heart so they can heal and grow. I have made many mistakes and compromised my integrity but never again. Especially where love is concerned. I miss the love ,companionship ,shared goals , the partnership, and of course the physical parts. Love is a wonderful thing in all it's factions right from the first kiss to the,play to the memories and fullness you feel. I had forgot how to play in many ways and that usually ended in hysterical laughter and affection. I hope to make things right whatever that means , so I will see what the future brings. I am also working as hard As I can to get my place ready for my baby girl to spend my days off with me and I am constantly moving things to make it comfy , calm and accessible for all of anayas needs.
I still am trying to track down a crib type thing / change table to make the transition smoother without having to move furniture around every time I take her overnight.
The most exiting part about anaya is the love at first sight , I don't know how my life will be when she is gone but until then I fill every waking moment with love for her. Unfortunately time is sometimes money and again I work to the bone to be able to spend more time with her and keep challenging thoughts like having to work extra when extra expenses arise. I am trying to give her all of me I can because she deserves the love of a lifetime in such few years . I am working on some portraits of Anaya and trying to find other parents and children to illustrate As well for a collection to remind people of the most precious moments in life and to hopefully get some interest and possibly funds to get more time for those myself. That's all we really have in this life is all those wonderful moments that are worth more than anything in the world !!

Unwell

I'm sorry for not having written much this week. I've been quite busy organizing my life, working on my CF business and consulting for a non-profit. I've also been missing my Vancouver friends and feeling a bit down... Anaya is alright. She seems to have more pain now and I try to keep on top of it with medicine. I now have her booked for Physio once a week. I'm going to try to have her massaged once a week as well. Her little neck muscles are so tight.

I hope to write more soon...but right now I'm exhausted from being up last night with Anaya. I'm so tired I feel sick. Hopefully it's not a bug. The nurse called in sick today.

All dressed up

I fell asleep before the story

Standing Beauty Today :)