Thursday, September 29, 2011

Home sweet home

Brent is outside, organizing his tool bin.  Buddha lays in the sun and watches while he sets one thing here, and another there.  Dogs must really wonder what the heck us humans do with all this stuff.  Anaya is laying on the couch beside me.  Her little fingers are gripping the edge of the recieving blanket that is tucked under her face to catch her saliva.  She is so beautiful and warm, sleeping peacefully there.  She just let out a little whimper.  She's been "talking" quite a bit in her sleep lately.  When she dreams she lets out little noises.  She's been quite vocal when awake as well.

She did quite a bit of moaning in her sleep last night.  She was uncomfortable. She was having trouble with her secretions and I needed to suction her quite often.  The night was long and restless.  When morning came I had a hard time opening my eyes.  Anaya needed extra special care last night and so I had layed her on my chest, her favorite spot to sleep.  Only now that she is so big it makes my lower back hurt.  I don't do it as often anymore, because of the pain it causes me...but sometimes she just needs it.  We do what we have to do for our children, us mothers of the heart.  Try sleeping with a 20 pound backpack on your chest while laying on your back! LOL.  I even tried elevating my rear with a pillow to see if it would take some of the strain off of my lower back...but it didn't work.
I focused instead on the sweetness of her.  The soft little breaths that became so much clearer, the silky smooth skin of her back.  I drew flowers on her back and fell asleep.

When I got out of bed I almost cried from the tightness of my lower back.  I stretched and took a Tylenol and it abated.  I started brewing coffee and carried Anaya from the bed to the couch.  She was awake and alert and interacted with me while I changed her diaper.  I sang her the "Changing Diapers, Changing Diapers! So much Fun! So much Fun!" Song and I think I saw her soul smile.  I covered her with a warm blanket and went forward to the captains nook to open the curtains and let the day in.

"Anaya, we live in a moving house!  Isn't that cool?"  I exclaim as I open the curtain.  "It's a beautiful day outside.  The sky is blue and I can see birdies flying over in the hedge across the street! If we listen really carefully we might be able to hear them singing!"  I sit down on the couch next to her and we try to hear the birds - but they are too far away.  My toes find little bits of dog food on the I reach behind the seat beside me and grab the Shark.  It's a mini-vacuum.  A dust-buster with attitude.  Thank god we don't have carpet.  I give our floor a quick clean (we only have like 90 sq ft of floor) and sang to Anaya.  I filled the bath tub and carried my nudie-baby down the hall.  I lay her gently in the bottom of the tub and helped her stretch out her legs.  It feels so nice... I can hear her say.  She loves the feeling of water.  The floating, the gentle relief of her joints and muscles.  I wash her in this amazing smelling natural soap that a friend sent us.  It smells like edible candy.  The scent is "Mango, sugar, mint" but it's just plain delicious!  It makes Anaya even more kissable.

I think back to a couple days ago when we first got here.  Settling in has taken a while.  Organizing things, putting stuff in drawers...not to mention the grief that seems to wash over me every time I think of my grandfather...

This is how it went over the past couple days...

After we parked at Natalie and Geoffs house we decided it would be a good idea for us to have a home base to work with while in the Lower Mainland (Vancouver) waiting to get into Canuck Place.  Fortunately Anaya's health insurance covers our accomodation while in the area on medical business, so we moved Anguard to the Burnaby RV park.  It is very clean and beautiful and much cheaper than a hotel would be if we didn't have a place to stay.  It is well cared for and well planned.  There are "Privacy hedges" around each site that are about 8 ft tall cedar hedge. Walking to the main building at the center of the park is like walking through a maze you see on TV of tall, immaculately groomed green hedges.  They are even pruned all square and rectangular.   There is a laundry room in the main building, as well as a small pool that is quite warm.  I was excited when I saw the pool.  I thought "oh that is awesome!  It's perfect for water-therapy excersize for Anaya!" She's been getting over her cold so we haven't taken her in yet.  I don't want to make her worse.  There's time enough in the days to come.

Right next to the park there is a trail that leads to Burnaby lake.  It is beautiful.  The forest is so lush here.  Vines climb the trees and surround them with so many leaves it looks like a second skin on the trunk. Blackberries grow madly everywhere, providing a natural barrier along the path.  We picked a few and even blended some up for Anaya with her mid-day meal.

Tomorrow we have an appointment at Sunnyhill Health Centre for children.  Anaya is being assessed  for her occupational therapy needs and her seat will be adjusted so that it fits her again.  Her stander is too small for her now too!

Oh, my sweet little love has woken up! I best go.

Sunday, September 25, 2011

The start of our journey

This is our view on the open road.  The wind rushes by our mammoth bulk and we cruise along at a whopping 40 miles an hour...slower uphill.  That's about 70km/hour.  Crossing the state of Washington was beautiful and mostly calm.  The traffic was sparse and the freeway was forgiving of our turtle-like progression.  Driving through Washington on our way to Vancouver was mostly peaceful.  With a moment or two of total stress. But this isn't where we started our journey.

Our journey started here.  In the shop.  Anguard needed to have an exhaust manifold repaired and some work done on the breaks to pass the safety inspection so that we could be CERTAIN that she will get us where we need to go, safely and surely.  Bryan the mechanic worked hard, staying after hours to get her fixed up.  He met Anaya.  He stood and took in the beauty of her.  Her cheek pressed against my shoulder, her long wavy gold hair floating on the breeze.  Wiping a tear from his twinkling eye, he stroked his beard and said "It's a damn shame." Then he disappeared beneath Anguard again.

Since Anaya's birthday, no, since a month BEFORE Anaya's birthday every moment has been full and busy.  Anaya was very sick with pneumonia and almost died, then we were busy getting ready for her party, then we had the party, then cleaning up and sending out auction items, then packing up the house, moving into Anguard the Anaya Mobile Care Unit, taking stuff to storage, having a yard sale, donating small clothes and toys...the list goes on.  It was an intense time.

Finally, with everything done we headed on our way.  Our plan was to stop at my Uncle's house in Idaho three hours south of Nelson to visit with my grandparents, and then take the interstate across Washington and up to Vancouver - as a way of avoiding the steep mountain passes on Canada's Hwy 3 which would have consumed more gas and been harder on our new breaks.

Having left Nelson at 6pm on Friday night we arrived at my uncles after dark.  We parked and settled in and went to bed.  In the morning I awoke feeling an urgency and a need to go into the house.  Brent was still in bed with Anaya, they were sleeping so peacefully.

Going inside I noticed that breakfast had already been had and that there was coffee on.  I asked my uncle "Where's grandma and grandpa?" He said that they had eaten breakfast and gone back to bed to lay down and relax.  I went into their room.  My grandpa was so happy to see me.  I sat with them and we chatted...I described this scenario in my post "Graduation of Grandpa".   Moments later he died.  Things kinda went sideways after that.  Grief is a hard thing.  It surrounds a home and family with it's cold embrace, gripping at the hearts and minds of those who are within. After the initial shock wore off I tried to lighten things up, giving grandma respite from her incredible sorrow by laying Anaya in her lap so that she could feel her calming presence and feel her baby skin and remember that life and death are one.  Even as the river and the sea are one.  That grandpa is not gone forever.  His spirit has been lifted from his earthly body and he is now free and one with God.

Grandma and Uncle Brett advised that we should continue on in our mission to take Anaya to Canuck Place in Vancouver.  They said that Grandpa had loved Anaya and that he would want her to get what she needs, and for us to get what we need. After four days at my Uncle's we left and headed west on the interstate.

 We didn't get too far before in became apparent that there was a problem with the battery.  The headlights became dim.  I pulled into a large parking lot to investigate.  Turning Anguard off I couldn't get her started again.  We had to get a boost from a passing kind soul, and then decided to park for the night and figure out the problem in the morning.

I called the mechanics in Nelson.  They advised me that perhaps there was a loose wire or that the old alternator had finally quit.  I found shop nearby in Spokane Valley and the manager, Andrew, was very helpful.  They diagnosed that the problem was a frayed connection that had caused the alternator to fry.  He replaced the alternator and the cable and we were good as gold.  Finally we hit the open road.  We crossed Washington, we saw windmills...we drove by the Gorge..

It wasn't until we arrived in Seattle that Anaya developed a fever.  Brent had been attending her the whole time.  Sitting beside her, reading her stories, feeding her, suctioning her...caring for her.  We imagine she must have picked up a virus at my Uncle's house as his roommate Debra was sick with a cold.  Anaya started to get really congested and was not well.  Angel could tell something wasn't right so she cuddle up to Anaya and gave her some puppy love.  Anaya loves feeling her soft fur on her skin.  We gave Anaya some Tylenol and exposed her skin to cool her down.  It was a warm day so we put a fan on her to ensure that she would not overheat.

I was determined to get to Vancouver and Canuck place.  We pulled into Bellingham WA to get gas.  Fueling up went well.  Getting out of there didn't.  There was an option to go either right or left.  Left went around the pumps and back to the road.  Right went around the building and back to the road...or so I thought.  I chose right and ended up stuck in a small dead end behind a McDonalds.  The young woman who had just gotten off shift was sitting in her car ahead of me, completely blocked in.  I got out and went to her window. "I'm sorry, I thought this road went around the building.  It's going to take us a few minutes to get moved.  We have to take the Van off of the Tow Dolly and then back up and turn around.  Brent worked on the Van while I stayed and cared for Anaya.

Finally I turned around, pulling the tow dolly to the other side of the parking lot to put the van back on.  Suddenly a lady comes running and waving her arms.  Apparently one of the chains from the tow dolly had slipped off, and attached itself to a man-hole cover that I was pulling willy-nilly across the parking lot. AHHHH!

After that I was a bit frazzled.  Anaya needed care and it would get dark soon.  We decided to stay in Bellingham and move further in the morning.  The night was long.  Anaya was sick and gurgley.  She had mucous coming out of her mouth and pouring from her nose.  Her oxygen tubing was covered in a layer of slime that we needed to clean up every five minutes.  Come morning in was definately clear that she was over the worst of it.  Canuck place called and said that they had to cancel our stay because there was a child who needed end of life care.  This happens frequently as end of life patients are priority #1.  I told them that it was alright because Anaya had just gotten a cold and we knew that it would be best for her to stay away from the other children, for everyone's benefit.  They said that they actually don't allow sick no Canuck Place for us this week.  Maybe next week.

We drove the last few miles to Vancouver and arrived at my friend Natalies house.  We parked there for the night and spent a few hours decompressing and caring for Anaya.  The cold has already started getting better.  She is clearer in her breathing and is more awake.  It seemed like she slept for two days.

This is the little princess in her bed that is next to ours in Anguard.  My friend Emily made the pillow for her :)

Ever since we moved in it seems like Anaya has been sleeping better.  She is comforted by our constant presence and is cared for with love 24 hours a day.

This is us parked in front of Natalie's house. The traffic whooshing by on the one side was soothing overnight.  It felt like we were sleeping on a boat.  It reminded me of Grandpa...and fishing.  He loved fishing and it was one of the last things he talked about. I miss him and am so sad about his loss.  But I understand it was his time.  His purpose was fulfilled and he has graduated with excellence! :)

I am striving to stay on the positive side of death right now.  I must stay strong for my baby girl and my family.

This is Natalie visiting us for morning coffee / tea.  I have OSO beans!

 Today Anaya is doing much better.  We are getting ready to prepare for our kick-off of Anaya's Walk to Save Babies!  I have been contacted by an executive director of a local school board who wants Anaya and I to come and speak to the board about presenting to schools in the area over the next two weeks!  We are very excited about it and hope to make a real difference in the way children view other children with disabilities.

I'm also beginning to contact the medical schools, nursing schools etc, as I am able to give them a presentation regarding newborn screening and the progression of infantile Krabbe Leukodystrophy - straight from the horses mouth.  As this is a rare disease many of them have never heard of it, and many will see it only a few times in their lifetime of practice.

It is incredibly important to recognize the early symptoms so that a child can receive treatment.  I will walk them through all of it.  I have a science background and I understand the chemistry and biology behind Anaya's disease.  I will also bring a human face to it, exploring the depth of love and emotion we feel, and relevance of Anaya's life.

While we are here in Vancouver I have a new phone number.  It is @778.997.0593@ please give a call if you have love to share or something important to say :) - Camara

Monday, September 19, 2011

Graduation of Grandpa

On Saturday afternoon we left Nelson and headed to my Uncle Brett's house, a stop over on the way to Vancouver. My grandparents were there visiting from Calgary.  They had not seen Anaya in more than a year. Anguard, the mobile care unit, safely carried us from Nelson to Sandpoint Idaho, a 3.5 hour drive.  Crossing the border was simple as we had all of the appropriate paperwork in order.  We arrived at my Uncle's at midnight, parked and went to sleep.

In the morning I got up and went inside the house to visit.  Grandpa Al and Grandma Vivian were laying in bed relaxing and drinking coffee.  Both of them have health issues that have them in bed a lot of the time.  My grandma fell down the stairs last month and broke her collar bone and her shoulder.

Walking into the bedroom, grandpa squinted at me and said "Who's that? Oh!  It's Camara!"  He gave me a big warm hug and seemed very happy to see me.  As there were no chairs in the room I got up on the bed and sat cross legged on the end of the bed.  We talked about the RV, we talked about Anaya, we talked about their memories of using Anguard for the last 20 years.  My grandmother was in the middle of a story about having a trunk of clothing on top of the car - that opened in the middle of the freeway...and we were all having a good laugh.

Then I looked over at my grandfather and his eyes were not normal, his expression was pained and he was not breathing.  I tried to wake him out of it but he could not answer me.  I ran to get my uncle.  We began CPR and mouth to mouth while on the phone with 911.  The ambulance arrived and the paramedics and firefighters worked on Grandpa.  My grandma layed on the bed beside him, while they tried to save his life.  I held her, and when needed I helped the paramedics with suctioning and maintaining the airway.

After a long time, and after trying everything, efforts were terminated and he was pronounced dead.  My grandmother is devastated.  They are making arrangements for cremation and for a funeral.  We will still be taking Anaya to Vancouver to Canuck place as cancelling that appointment would be detrimental to Anaya's health.  I'm sure grandpa would want me to take good care of the baby instead of cancelling her appointments to go to his funeral in Calgary, Alberta.  Grandma and Uncle Brett agree.

Anaya is doing well and got to have a nice warm soak in a tub yesterday. She is a huge comfort to grandma as it takes her mind off of losing grandpa. Angel and her puppy kisses make grandma smile and I held grandma's hand as she fell asleep last night.

I will post again as soon as we get to Vancouver.

Thursday, September 15, 2011

First Words

Today Anaya and I had our first speaking engagement.... But the day didn't start there...

Early in the morning the smell of skunk began to waft in my face through the window. We were parked in the driveway of Diana's house...and the local skunk must have let loose. Anaya woke up too and made a little noise. I got up, closed the window, used the bathroom, drank a glass of water and went back to bed. It was five am.

Anaya communicated to me through her grunting noises that she was uncomfortable. I ran my hand over her body and tried to figure out what was wrong. She was chilly. The night air had seeped through the thick fleece blanket. Quickly I changed her diaper and rolled her onto my chest to cuddle her and warm her up. We instantly fell back asleep and were woken two hours later to he sound of the alarm.

I rushed to prepare to take Anguard back to the shop. Brent and I loaded a few last items, and headed back to Hywood. Brian, the Heavy Duty mechanic and Matt the Manager were there to greet us. Just a few more things to fix up so that she passes the safety inspection...she'll pass by the end of the day... FANTASTIC.

So we loaded Anaya, Buddha, Angel and I into the van and went uptown. My friend Carol took us out for breakfast and it was truly lovely. It's been a long time since Carol and I spent time together and I have missed her so much. The food was incredible. So delicious. The best breakfast in Nelson is at the Full Circle Cafe on Baker Street. Carol treated all of us to a dish known as veggie hash. Sounds funny I know. But it's amazing.

Two soft poached dark yolked eggs sit atop a mound of freshly fried potatoes and yams, sautéed in a spicy curry sauce. Chunks of goat cheese are embedded throughout the potatoes and the whole thing is smothered in Almond Miso gravy. Mmmmm. Brent and I both commented that it was too bad Anaya was sleeping as she might have enjoyed tasting the gravy.

After picking up some Velcro strapping Anaya and I walked down to see the Doctor. Dr Garcia examined Anaya, gave her a clean bill of health and said she is fit to travel :) She also updated Anaya's prescriptions and now we have enough to last several months.

Anaya has gained weight too :) she is now 10.5 kg. Approximately 24 lbs.

Then we went back to Hywood, gathered a few things from Anguard and hit he road to Castlegar. The drive was beautiful. The highway meanders along beside the west arm of Kootenay lake and then it turns into a river that falls down five dams before Castlegar. It generates a lot of power for both the USA and BC. Anaya, being blind, couldn't see the dams...but we told her about them. Brent sat in the back of the van and held her hand, suctioning her when needed. I drove. I get carsick easily in the back seat.

Pulling into the college 15 minutes early I pull out my study materials and go over them one more time to make sure I've got my facts straight. Only 2 states test for Krabbe. New york and Illinois. BC screens for 22 diseases but not Krabbe. There are thousands of children living and dying of leukodystrophy every year.

Brent lifted the stroller from the back of he van and helped me to gently place Anaya in it. She lay upon a nice fluffy pillow and we attached the suction and oxygen and headed inside.

Mike Coules met us at the door to the class room with his HD video camera. We stood and chatted for a minute as the room was rearranged into a circle. The instructor, Rosalyn Grady, a spiritual elder with the council of 13 grandmothers, welcomed us and introduced us to the class.

Sitting down I found myself facing an entire room full of beautiful souls. I could already feel their interest in what I was going to say. Brent sat directly across the circle from me to lend me his support throuh eye contact. I lifted Anaya from her bassinet and said "Hi, I am Camara and this is Anaya. Anaya has Krabbe Lekodystrophy." I then launched into telling her life story.. The ups, the downs and the incredible lessons and love we have learned from her. I spoke about newborn screening and stem cell treatment. I spoke about depression and relationship issues that can occur in parental relationships of children with special needs. I spoke about the family dynamic and Anaya's beautiful and healthy older sister, Solara. I spoke about everything.

When I was finished half the class was in tears. They then took turns telling me what the learned from what I had spoken about. It was beautiful and gratifying. We made a big impact today!! I set out some bumper stickers and just about everyone in the class gave a financial gift and took away a bumper sticker. :) How awesome is that. I brought them just on the off chance somebody might want one. I had no idea how popular they would be.

After that we went home to Anguard, took the dogs, and Anaya for a walk

and found a place to park for the night. Whew!! Long day.

Anaya is complaining with a little whimper... I'd better check her tummy. I will post video of our talk today ASAP :)

Lots of love to all of you.

Location:Castlegar, BC

Tuesday, September 13, 2011


Her fingernails have gotten long again. I only noticed now, seeing her in someone else's arms. When I'm holding her I see her face, mostly. I sit and rub my nose against hers. She has a petite little nose. It sits cute and perfect above her fat pouty lips.

Oh her beauty astounds me. Her sweet innocence, her wide eyes and golden angel locks. She sleeps beside me while I type this on my phone.

Last week a photographer named Carol came and took pictures. She had contacted me offering a sponsored photo shoot. She came from 8 hours away just for us! She got some really lovely pictures. Anaya looked so cute that I snapped a few too.

The sunflowers were procured by myself. I saw them in a yard on Latimer St and stopped in to tell the owner my idea, and ask if we could have some flowers. She Said yes and away we went!

The past few days has been really interesting and totally hectic. Imagine moving from a three bedroom house into a studio apartment... That's what we are going through. Anguard, Anaya's Mobile Care Unit, is like a bedroom, bathroom, kitchen, livingroom, all within 20 ft.

Anaya's oxygen machine is purring quietly in the background. It reminds me that we still have a small pile of stuff to bring in and put away. packing and unpacking. It goes on and on. Thank god for good friends like Nancy Ryde and Christina. Id be a mess if it wasnt for them.

This past weekend we had a yard sale and sold a lot of the things we don't use anymore to raise money for Anaya's care. I tried to sell my pottery kiln but didn't have any takers. After the sale died down we put up free signs and everything else disappeared overnight. It's a good way to recycle stuff. People like it too. It feels good to give back to the community. I gave a lot of Anaya and solara's old clothes away to children who needed them. It felt great. I kept some special items for an online sale too. I think we'll do it in November.

Tomorrow Anaya and I have our first speaking engagement at Selkirk College in Castlegar. I'm hoping that it will be awesome. I will try to have someone film it or tape it so that you can hear too.

I'm headed to bed. Morning comes early lately.

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

Location:View St,Nelson,Canada

Sunday, September 11, 2011

Brief Update

Anaya is still doing very well. Her breathing is clear and she is comfortable and happy. The past few days have been a whirlwind. Sold a lot of our belongings in a yard sale today.

I'm so exhausted I can't think what to write about.

This week is very very busy and it may be a few days before I get time to write again.

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

Wednesday, September 7, 2011

Happy Breaths

Upon awaking the first thing I notice is that I cannot hear her breathing.  The usual gurgle of her inhalations is not present.  Concerned, I pull the covers back from her sleeping angelic face and watch her chest.  It's moving in a regular rhythm.  Up, down, up down.  Putting my ear closer to her face I listen...

Her breath, peaceful and quiet, draws in.  My ear is so close to her nose that I can feel the air moving near my ear.  She exhales and it's so clear, so perfect. So normal as to be abnormal.  I smile to myself and the happiness begins to radiate through my body like anticipation on Christmas morning.  It starts in my smile, spreads into my jaw, my forehead, down the back of my neck, shooting down my spine.  I feel like I could jump up and down shouting "I won! I won!" but of course, I didn't do anything.  Anaya's the one winning! She continues to defy the odds, even getting healthier than she was before.  I swear she also has a new level of alertness.  She is learning more and more and growing into a little toddler.

Anaya rests on, sound asleep.  I put my finger in her hand and she squeezes it.  This is a new thing, this holding of things with her hands.  She just started doing it a few weeks ago.  For more than a year her hands were limp and pretty much devoid of "grip".  Now she will hold just about anything you put in her hand if she likes the feel of it.  She holds her Gnaw Gnaw, she holds her Bambo doll, she holds the edge of her blankie, she holds my shirt collar, holds the edge of the bassinett.  Sometimes I catch her holding her oxygen tubing or her feeding tube.  Lets just hope she doesn't start yanking on them and hurting herself!

It's only six am, but I'm wide awake.  Anaya's quiet breathing woke me.  The happiness and excitement I felt about her breathing would not allow me to go back to sleep.  I slipped from the bed and headed downstairs with the intention to blog.  Angel greeted me from behind the puppy gate in the kitchen.  Her fluffy golden ears and brown eyes accentuated her puppy smile.  She wagged her little tail and barked a little Good morning! Love me! Love me! I need to go outside!  Play with me! So I picked her up and took her outside.  As soon as we hit the grass, she peed.  I praised her.  We walked around the house to where Anguard is parked.  Passing the saw table and scraps of wood strewn near it, we approach the RV.  I opened the door and stepped inside.  Angel sat at the bottom of the step stool we use for steps, looked at me and whined.  I stepped down.
"This is what you do," I said. "this one and then this one and then this one."  I tapped each step in sequence.  She seeemed to catch on really quick and got up the steps on her first attempt.

This is looking so much better.  I thought, looking around.  That laminate will be so much cleaner than having carpet.  I don't much care for pink carpet anyways.  I walk down the hall towards the bedroom. Brent was up until I don't know what time working on the bed patform.  It looks good. Small pine rails criss cross the room in a frame, leaving room for storage beneath the bed.  The section for the queen mattress is butted up against the section for Anaya's mattress, making one large bed, with her mattress being half as long, which leaves room to stand near the opening of the room, where the closet is.

Smiling to myself, Angel and I head back towards the door.  She finds a ball of tape remnant on the floor and charges at it, gripping it between her teeth and shaking her head with puppy vigor.  I laugh out loud when the tape sticks to her face and the surprised look on her face is just priceless.  I help her remove it and we head back to the house.

Today is another big day. At eight thirty Anguard is going into the shop to have mechanical repairs.  Toyota is sponsoring much of the labour costs, as is Hywood Truck.  I hope that the repair goes quickly so that we can finish the bed platform and get moved in.  The RV is like a Mobile Anaya Care Unit. It's the size of a very small one bedroom apartment. There is a milk deep freeze behind the passenger seat, the oxygen machine straps to the wall beside it.  Brent plans on building stabilization shelves right near the bed for the suction and nebulizer.  Anguard even has an Anaya sized bathtub.

Entering the house I glance around. Holy cow I need to pack. Everything that is not going into Anguard will either be sold in a yard sale or put in storage.  With all the things going on this past month I have not been able to keep the house tidy.  It's clean...but there is stuff out of place everywhere.  I peek into the bedroom.  Brent and Anaya are still sound asleep.  Quietly I go back to the kitchen and brew a pot of OSO coffee. MMmmm. I love it so much.  It makes my morning even more awesome.

Pouring the first cup I admire it's dark golden flow.  Steam and coffee aroma rise from the cup, tickling my nose and enticing me.  I think I could write a short story just about drinking a cup of OSO lol.  The first sip bites at my senses and snaps me to attention.  Caramel undertones a just roasted nuttiness that sends tingles through my tongue.  I take my OSO over to the couch and start writing.

"Happy Breaths"

Sunday, September 4, 2011


What a beautiful day! I sit on the grass in the shade with Anaya beneath the awning of Marty and Christine's RV. It's a work party day. The men (Brent, Grant and Marty) are all making quick work of the interior of "Anguard" The RV. It's got so much character that it needed a name.

Our new home on wheels will take our family safely to Canuck place and on Anaya's Walk to Save Babies. Even though it's old it's in decent shape. The guys cut out three different wood sections that had rotted away and put new plywood in. The problem was that the windows were leaking. Grant used to build houseboats, which have similar windows. He said they just needed to be resealed. He picked up a roll of window sealer and is currently taking each window out and resealing them.

Marty worked on the bedroom floor.

And Brent is working on the wall under the window by the dinette.

Christine is a nurse and her and I are watching Anaya. I'm super excited because Marty and Christine booked me a massage this afternoon! Its been forever. Christine is super nice.

I feel so much gratitude in my heart to have met these wonderful people. Christine reads my blog and contacted me about coming to visit to help out. Of course I said yes! She took this picture of Anaya and I.

So things are coming together and getting fixed. We are excited to begin this new journey. Anaya's Walk to Save Babies is going to change Newborn Screening in North America. Not one child should go untreated for a treatable disease.

Anaya's Life Makes A Difference!

Life Is SWEET!

Anaya is doing so well today! She even held her head up! She seems to be over her cold. Her big sister heads out to Calgary today to stay with her dad for a while. We are sad to part but I know spending some good time with Kristian will be good for her. He has lots of time and lots of energy. His positive outlook on life is admirable.

This is a pic of Anaya and Brent.

Daddy's love their baby girls!

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

Thursday, September 1, 2011

A Summary of Summer!

written by Natalie Degoey.

It began with a trip to the Humuh Monastery, where Anaya met a real live enlightened being, the Wisdom Master or “living Buddha” of the monastery, who had many wonderful things to say about Anaya’s purpose in this life.

While Anaya and family were visiting the interior of BC, she developed pneumonia which was misdiagnosed as a cold, and developed over the next weeks into a very serious and life-threatening illness. Her family decided, with input from her doctors, to take her home for her final days. This decision caused tension with the nurse who had been helping the family, and ultimately they ended up without any nursing care, a situation that still is not resolved. We almost lost her a couple of times, but are happy to report that she has made a full and miraculous recovery, thanks in large part to the tireless care and attention provided by her entire family, and also thanks to all the love and prayers that she received from her supporters at The Anaya Initiative. We truly believe that this focusing of so much positive energy on one little being is a huge part of what has kept her going for so much longer than most babies with her condition!

As a testament to how she is thriving, Anaya was recently lucky enough to celebrate her Second Birthday!! This is truly incredible, as most Krabbe babies are not allowed to stay with their families on earth for longer than one year, never mind two. Anaya is a miracle baby, and in honour of that, her family celebrated in style, with a big Birthday Bash at Lakeside Park in their hometown of Nelson, BC. Almost 100 people attended in person, and thousands were there in spirit, from all over the world! Fundraising consisted of a live silent auction, and several concurrent online events, including auctions run by JustaWeeBab and Blissful Creations by Lyz, and an ebay auction of a one-of-a-kind Bamboletta Doll. These Waldorf dolls are prized by collectors, and the adorable Leila brought in over $1500 all on her own!

Thanks to the generosity of all Anaya’s international family, we were able to raise enough money for Anaya's care and to begin to plan Anaya’s next adventure, Anaya’s Walk to Save Babies, details of which will be shared over the coming weeks. It involves a tour from Nelson to Vancouver, and down the coast into Washington, Oregon, and California, spreading awareness about newborn screening for Leukodystrophies, and teaching kids about people living with disabilities! Along the way, Camara will be blogging about their adventures, with the goal of creating a book about their journey. To kick off Anaya’s Walk, she will be receiving a week of care and attention at Canuck Place Hospice and BC Children’s Hospital in Vancouver. There, Anaya will have some assessments done, and the rest of the family will get some respite time to focus on preparations for the next leg of their journey together!

Anaya will be visiting friends all along the West Coast of Canada and the US, so if you would like to meet her and her family, or if you know of a school or other organization that would be interested in learning more about Leukodystrophy (and other demyelinating conditions) or living with disabilities, please get in touch.
You can reach us at 1-888-936-9930 or by email info at healinganaya dot com.

Packages can be sent to our administrator Natalie Degoey (who will forward them to us) at: #5, 6670 Rumble St, Burnaby BC V5E 4L4.

Mail can still be sent to 1111 Hall Mines Rd, Nelson BC. V1L 1G5