Salem

It feels like it's been a while since I've written.  So much has happened.  Where should I begin?
The idea of trying to fit it all into a post seems rather daunting at the moment.  I'm exhausted.
I'll try to sum it up.

We were in the Statesman Journal newspaper yesterday.  It was a nice article.  It has since inspired a few people to stop by the RV sales lot where we are staying and offer their help.

A kind elderly man named Floyd asked us to come speak in his chapel on Sunday...tomorrow, Pam came and stroked Anaya's head, the Davidson family brought us some lovely vegetables, people have been calling and e-mailing with their prayers and good thoughts, and Phil and George invited us to perhaps have the old RV towed to their acreage, as a place to stay while we are fundraising...instead of living in the RV parking lot here at Northwest RV.  We love the people here at Northwest RV.  They've been helpful, sincere, kind and trusting.  Being welcome to stay here has been such a blessing.

All of these people have hearts of Gold.  We have met simply amazing people since we arrived in Salem. I'm so thankful that we broke down where we did.  We are safe and we have found friends and community.

Tonight we went to a book signing at the H.O.M.E. center.  We had a prayer circle with a healing intention for Anaya.  We imagined her whole and well, as perfect as she was when she was born.  Afterwards she was wide awake and moving her mouth as though she was trying to form words.  She was moving her lips and her tongue in a way that is unusual for her - and very exciting for me to see!! It was like she had a taste in her mouth that she was trying to figure out.

She had a bit of a rough day.  Angel snuggled with her as she slept most of the day - it might have been because she was up most of the day yesterday.  Last night she slept through the night and I thought it was amazing. But then today she slept so heavily that she wasn't coughing up her secretions.  I began to worry about that.  It began to build up in her lungs and I could hear it rattling around in her chest.  I gave her chest physio, but still she slept.  Finally she awoke, gave a huge heave and cleared her lungs.  Thank God.  Pneumonia is always a worry when she gets like that.

Yesterday was amazing.  Anaya was awake and aware and so precious all day.  She did art and listened to music. :)

Quick update : Through Fundrazr we have raised $970 so far. See below.


Give

You can click the button to watch Anaya's video about the mobile care unit.
Through the Healing Anaya site we have raised $5100.  So that's a good start to our campaign.  We are open to whatever is meant to be.  The path will show itself.  In the meantime we will continue putting our best foot forward- love and care for Anaya - and share her story with whoever will listen.

If anyone would like to reach us feel free to email info @ healinganaya.com

If you'd like to help out please click the Donate Button or just stop by for a chat and a hug.

By the Grace of God

Anaya sleeps next to me on the couch while I write.  Her silky blond hair fans out across the pillow.  Each breath she takes causes the soft pink blanket to rise and fall gently.  My sweet baby girl is doing well.  Her lungs are clear.  Earlier this morning she was making her little noises for me, with her eyes all wide.  She thanked me for clearing out the morning mucous.  She's been really sleepy since we started the new medicine.  The doctors say that it takes a little while for the body to become accustomed to it and then she will be more awake again.  I think that the sleep is probably good for her.

Sometimes in her dreams she moves her hands and feet, makes noises, and occasionally makes a nursing motion with her lips - like she used to when she was still breastfeeding.  It makes my heart swell with love and I remember what it was like to hold her close.  Having her looking up at me while nursing.  Her beautiful baby soul connecting with mine through her bright hazel eyes.  Since she went blind we connect in a different way.  Being with her all the time I am able to intuit what she needs.  I feel her.  It's a form of communication utilizing body language signals, compassion and empathy.

Right now I know she feels sleepy :) I'm working on finding some help using my computer.

Anguard (Our motorhome - Anaya's mobile care unit) has gotten us as far as Salem Oregon.  Then her engine siezed up and died.  We were fortunate to be on a beautiful back road and not on the interstate.  The state troopers helped us get in touch with a good towing company, and our AAA coverage had us towed to AJ's Automotive in Salem.

We are keeping a bright and positive attitude about the situation.  Obviously God and the universe has a reason for us to be broken down in Salem Oregon!  So I paid attention to the little signs that were being shown along our "path".  I dreampt we went to church. So on Sunday we decided to seek out a church and see if they would let Anaya and I speak.  I chose the "New Thought" church as they sounded small and open-minded.  The service was on following the path of your purpose!  What a perfect, synchronistic message.  I raised my hand and asked if I could address the congregation.  Anaya and I moved to the front of the room.

"Hi, my name is Camara.  Over there is my partner, Brent.  This here is our Baby Anaya.  Anaya is a living miracle.  She was expected to die more than a year ago.  She has a brain disease called Krabbe Leukodystrophy." I went on to tell them more about Anaya's life story...I told them about our search for healing, and the lessons that we have learned.  I told them about our new acceptance, about being in the now, living with love, living with joy.  I told them about newborn screening and about how all babies should be tested.  At the end of my talk I explained that we were now going to be in Salem for a while, as our motorhome broke down. There is a link to the service on the Home Center Website where you can listen to it.  We are willing to speak to all types of churches and do not discriminate by religion, race, sex or wealth. This particular center is a New Thought Church.

We had several people come up to us after the service offering a few dollars to put towards the engine repair.  One woman offered to let us stay in her house if we are still here in 2 weeks when she goes on vacation!  It's amazing what God will put in front of you if you follow the path that you are shown!

Monday came and the Glen and Bob, the owners of AJ's Automotive (really amazing men - honest and kind and good-hearted), came to give us the bad news.  The engine is not worth fixing, and the motorhome is not worth a new engine.  They explained that in this type of unit the engine ALWAYS overheats, causing expansion in the aluminum pistons that is faster than that of the steel block.  The pistons fuse to the sidewalls of the engine.  They say that this engine was meant to be in a large pickup truck and they have no idea why Vanguard made such a large motorhome with such a small engine.  They say that if we find another engine, the same thing will happen again - it's just a matter of time.

One of the last things my grandpa asked me just before he died was "Is it overheating?" 
I said "Not that I've noticed". 


"We used to have trouble with that" He said.


I phoned my grandma and told her about the engine trouble with the motorhome.  I shouldn't have.  It made her cry, she felt so bad about it.  I'm sorry grandma, I didn't mean to bother you with it.  Don't worry - everything will work out.  We just have to have faith and love and live in the moment.  God will provide.

After my talk with Glen and Bob we brainstormed about what we could do.  Bob suggested we go look at used  coaches (motorhomes) for sale and see if we could trade in Anguard for parts.  We thought that sounded like a good idea.  Brent went on line and one of the first things he said to me was "Look! This one has a wheelchair lift! and the whole thing is handicap accessible!"
    "Really?" I said.  That would be SO amazing. It would make life with Anaya even more simple. "Why don't we go look at that one." I said.

So we went down to Northwest RV in Salem Oregon knowing that faith would guide us.  We were welcomed by a nice young woman, and shown to the RV by the Sales Manager, Kimberly. It blew us away.  It is absolutely perfect for living with Anaya.  Not only that, it is for sale for HALF of the assessed value due to the economy downturn.  Here are the pictures and a video of Anaya trying out the lift.

This is the outside of the Unit.  It is a Winnebego Voyage with handicap option. 2005

This is the wheel chair lift.

This is Anaya in her special stroller on the lift

Accessible shower (room for a baby bath tub!)

Front of unit

Bedroom (Lots of space to add Anaya's Bed.) Storage is on wall at foot of bed.

There by the grace of God we go.  The motorhome is valued at $112,000.  After hearing our story the dealership is willing to sell it to us for $57,000.  In faith we have put down $2000, subject to mechanical inspection.

The good people here are going to take Anguard in on trade (not yet appraised) and let us live in Anguard here, while we raise the money for Anaya's new Mobile Care Unit.  We have two weeks to raise 55k for Anaya.

I have contacted the Hunters Hope Foundation. We are a registered family with their organization.  They Kelly's son, Hunter, lived with Krabbe Leukodsytrophy - the same disease Anaya has. We are working with them to promote Newborn Screening to save the lives of babies.  They are able to give Charitable Tax Reciepts to those who donate to Hunters Hope in Anaya's name.  Anaya will then be given those funds.  This option is for American donors only.  It's really wonderful because it means that people and businesses that would like to help out can do so while getting a tax break!!!  It's a write off  :)

For the next two weeks we are going to fundraise, network, speak and promote with every ounce of our beings.  We have faith that if we put the effort in, and follow the path that God has shown us we will succeed and Anaya will have a new mobile care unit to continue to spread love and awareness throughout North America!

We NEED your help!  Please help us continue this amazing journey with Anaya!
Spread the word!! Share our story!!
Book us to speak in advance!!

How you can help!:
Needed: volunteers to help organize online auctions of our belongings
Needed: web designer to volunteer to help manage the websites
Needed: people to joing our facebook page.
 Needed: contacts and friends in Salem Oregon
I can be reached at 208-946-5234 or at info@healinganaya.com

We can do this. If you went out for lunch today what would it cost you?  What about a cup of coffee? Please spare whatever you can.

Our little love is a miracle.

If you'd like a tax receipt please donate through HUNTERS HOPE at
https://secure3.convio.net/hhf/site/Donation2?df_id=1320&1320.donation=form1 
When you are on the Hunters Hope donate page there is a spot where you can click to make your donation a memorial or honor.  Please make your donation in honor of Anaya Cassin Potts. If you forget this step they will not know the money is for Anaya.
  

Kissing Anaya

RIP Anguard

Anguard will not be carrying us any further.




We have faith that our path is not ending here. There have been amazing signs put out to us.

Anaya's lessons will be shared with the world. Tomorrow is a new day. Please pray that something wonderful will present itself!

Anaya is still healthy and growing like a weed. I just finished giving her a full body massage for two hours. Now we are all going to sleep.

I will fill in the specifics in the morning.

Thank you, God, for the challenge that you present to us. Let us rise to the occasion and see it as an opportunity!


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

The Red Maple

This morning I found myself walking in a fall wonderland of mist, dew, falling leaves and quiet.  The stillness occasionally broke.  A dewdrop fell, a bird sang.  Buddha, Angel and I tread lightly down the sidewalk, taking in the neighborhood of Home Way, McMinnville, Oregon.  Each house sat on nicely on a good size lot.  It looks like the people of this area like to keep their yards tidy.  Gardens of roses, dahlias, lambs ear, rhododendrons, grasses, sunflowers.  There was a little bit of everything.  The lawns are lush and green.  The apple trees are so moist that they are growing moss.  I wonder if the apples like being so wet.

We turned the corner and saw it.  It stood out like a flag on a windy day.  A giant maple tree, leaves all turned red, stood gloriously apart.  The wet, dew covered, leaves, shone scarlet in the rising sunlight.  I could not move, so entranced was I by the  majesty of it.  There by the grace of God go I.  I thought and began moving towards the maple.  Buddha sat beneath it already, waiting for me.  Angel walked by my side and we both turned towards an unusual sound.  To the right, across the street there were some tall spruce trees.  At the top of one sat an eagle.  He was serene and unmoving.  Peacefull.  The noise was coming from a crow that was harrasing the eagle.  Caw! Caw! The crow sqwaked at the larger bird.  I watched as the crow flew up to the eagle and tried to bait him out of the tree.  He batted him with his wings and flew around him incessantly cawing.  He dove and pecked and sqwaked.  Angel sat down on my foot and watched with me. 

The eagle seemed to be ignoring the crow.  He wasn't even giving him the time of day.  All of the harrasment almost went unnoticed.  The eagle turned his head and looked towards me.  For a moment I could see through the eagle's eyes..  I saw a human and a dog watching me watching them.  I saw the incredible view of the red maple tree from above and I saw the peace within the woman.  The mirror of life. I thought.  The moment ended and I snapped back into my body.  Standing beneath the red maple I gained strength and knowledge from the peace of the natural world.

We turned and walked back down the street toward Anguard, parked at Kimi and Chad Clark's house.  Walking with cheerful peace my eyes took in each flower and dew drop.  I saw a beautiful rock garden, full of hens and chicks and creeping Jenny.  I saw an immense stand of grass.  The feathered tops stood at least 10 feet up in the air.  I took in the bumper stickers on the cars parked under car-ports.  Co-exist said one.  I couldn't agree more.  I smiled. We rounded the corner and on the corner lot was a beautiful small grey house.  The garden was beautiful.  It was private and hedged.  There were a plethora of different plants and medicinal herbs growing around a small pond with a fountain.  A bird feeder stood near the "seating" area of the garden where there were three chairs and a table.  Baskets hung from the house, and plants thrived everywhere in the lush yard.  There was not a single blade of mowable lawn anywhere.  It was all rocks and perennials, trees and shrubs.  It was gorgeous and reminded me of the homes in Nelson.  We passed the driveway.  In it stood a Prius that had a bumper sticker that said "Buy Local".  I could tell that the people who lived here were people who shared some of the same values as I have.  The thought crossed my mind What would happen if I knocked on the door and said "Hi!  I'm Camara.  I love your garden.  It's wonderful.  You're design is lovely.  I just wanted to let you know how beautiful your place is.  It exudes a love of life.  Have a great day".

I smiled and kept walking.  The tail lights shone red on the back of Anguard.  What the?  I thought.  Why are the lights on?  I opened the door.  "Brent, did you turn the lights on?" I asked.
   "No" He said.  I went up to the front and pushed the light knob back in.  There were puppy teeth marks on it.  It looked like Angel had decided to pull the knob out.  I hoped that it hadn't been on too long and drained the battery.  It would start anyways.  There's a button that you can push to use the other 3 coach batteries to start the engine when the engine battery is low.

I tip toed down the hall into the bedroom.  Brent lay, facedown in the pillow, hand holding Anaya's.  They both slept.  Anaya made small noises in her sleep.  She was congested and trying to clear her throat. It had been a rough night.  It was Brent's turn to be on "Anaya Duty" last night.  That means that he's the one who slept next to her and manged her suctioning, positioning etc.  We alternate nights.  That way each of us gets more sleep every other night.  Of course if it's really bad then we are both awake, helping Anaya.

The new medicine has been a mixed blessing.  It's called Robinol.  At first it thickened her secretions and she had a really hard time.  Then she was nice and dry and easy-breathing for the whole day yesterday.  Then last night it was back to thick mucous and congestion.  I pray that it will even out for her.  My heart aches to see her struggle.  I know that thick mucous can lead to pneumonia.  This morning I have a phone call with the doctor to discuss how the last few days have been on the new medicine.  Perhaps the dosage needs to be changed...or perhaps she just needs more time on the meds to balance out.

She lets out a sigh and her eyes flutter.  My beautiful little angel.  My little Love.  I kiss her forehead lightly and back out of the room.

Brent and Anaya remain sleeping.  I'm inside the house now, writing and planning our day.  Kimi says that their town has a lovely Saturday market.  We are going to go and check it out.  I may print off some information about newborn screening and take some bumper stickers to sell.  It would have been lovely if we could stay longer and speak in the local school.  However, we have an appointment in Grant's Pass monday morning, to have a part put in.  The manufacturer, Super Steer, is donating the part - which is super awesome! It's about 2.5 hours away from here.  The owners of the company are very kind.  I look forward to meeting them.  There is a chance that I might be able to go with Barbara to a womens dessert tonight...I was told that there is a person there who has very strong healing prayer abilities.  It would be nice to have them pray for Anaya.

After Grant's Pass we will head throught the redwood forest and into Northern California.  I'm beginning to search out places that would like to hear our story.  People that would like to meet our little Love.  Our little Anaya.  It's still amazing to me how people just open when they come in contact with her innocent presence.  Their hearts swell and they feel suddenly as though the world is not as bad as they thought it was.  Somehow Anaya renews their faith in life, and in miracles.

Anaya stands out.  Her presence is as glorious and beautiful as The Red Maple and as calm and serene as the Eagle.  She is love manifest.

 There by the Grace of God we go!

Happy Canadian Thanksgiving!

We are having Thanksgiving dinner with friends in Vancouver.  I was asked to cook the turkey and do the stuffing and the gravy.  So we've been here all day!  When we arrived, with Anaya all dressed up, Jon took some photos of us.

Here they are!

Look at those bubbles on the right!!! She loves blowing bubbles!

And then Anaya decided that it would be a good time to "cut loose." Her whole dress was covered in poop. So was mama! Poor baby girl!  Poor mama!

So we changed her into her back-up outfit...a pink sleeper.

Happy Thanksgiving Everyone!

Love will Save the Day

Anaya's either sick with a cold again or the disease is now causing excess production of nasal mucous.  All night she had trouble breathing through her nose.  I don't know how many times I woke up to suction her, how many times we changed her position.  I can't count how many times I kissed her little face and told her it would be okay.  The night was long.

Yesterday Anaya lay in a drainage position most of the day to help her manage her secretions.  Brent brushed her golden blond hair until it lay fanned out across the pillow like a crown around her head.  I ran my fingers through it, feeling the silkiness of it, admiring it's loveliness.  I always thought that little girls with long curly hair were so adorable.  Solara was practically bald until after her second year.  Anaya's had a lot of hair the whole time.  In fact she never really lost any after she was born.  It was darker though...it has really lightened up.

Curious George played on the television in the background.  Anaya's eyes followed the sounds to the tv and to any onlooker it would appear that she was watching it.  I so miss her vision.  I miss her looking at me.  I miss the way her eyes would look into mine.  They were so beautiful, truly the window to her soul.  After a person goes blind and mute the eyes are no longer the window into the soul.  You have to reach out with your awareness, with your intuition, compassion and empathy, and feel their soul. Most of the time I can tell what Anaya is feeling.  She was sure feeling lousy last night.  The congestion made it hard for her to sleep, and she conveyed her distress in long drawn out sighs that sounded sad.  Even in her sleepy, sick, state she was sure to thank me for suctioning out her nose with a slightly higher pitched sigh that sounded like relief.

One of the countless position shifts last night resulted in Anaya having neck spasms.  I massaged for half an hour, but they did not abate.  The little muscles on all sides of her neck were spasming and I could only imagine what that would feel like.  Her head twitched slightly every second or two.  The massage was not helping.  I decided to change her position again - to one I seldom use.  I fluffed up my pillow and moved her to the middle of the bed, laying her on her side, high up on the pillow.  I carefully pulled extra tubing toward her for her oxygen and milk, and lay down beside her.  My face was inches from hers.  I pulled the blanket up over our shoulders, wrapped my arms around my baby and held her.  I stopped trying to think of a solution.  I just held her and loved her.  I felt the warmth of it spread out from my heart and out towards my arms.  I felt the love in my fingertips and the lightness and beauty of it tingling there. I imagined the love flowing over her skin and surrounding her. I opened my eyes.  Anaya's spasms had ended.  We fell deeply asleep, bathed in the glow of mama-baby love.

On waking this morning I knew she needed to sleep longer.  She didn't even move as I slipped from the bed.  I noticed her breathing was clearer, although still coming quickly sometimes, and slower at others.  I kissed her cheek, again astounded at the softness of it.  It's like kissing an angel.  She has the softest skin of anyone I've ever felt.  She sighed delicately in her sleep. I got up to call Solara.

   "Hi Sola! How are you?" I asked.

   "I'm good mama, today's a day off school.  I'm with my friend Kaitlyn." She said.

   "Are you guys going to do something fun today?" I asked her.

   "Yeah, well maybe we're going to play at the park or something.  Maybe we will jump on the trampoline!" She exclaimed. "Mama, can I call you later? We're gonna go play now."

    "For sure." I said.  "You can call me when ever you want.  I love you sweetie.  Bye-bye."

It's good to know that she is having fun and is happy.  I miss her so much.  She's been at her dad's house in Calgary now for a month.  She's attending the school she used to go to when we lived in Calgary.  Some of the same children she was friends with as a toddler still live in the neighborhood.  She is comfortable, well cared for and happy.  That makes me happy.  I know that Anaya's needs are high and that Solara needs more attention that I am capable of giving her in our day-to-day right now.  Her father's place is the best place for her.  She visits with extended family (grandma and grandpa and auntie) almost every weekend.  I speak with her at least once a day.  But I still miss her perky little smile and her warm hugs.  She is my sunshine.

Almost on cue, the sunlight streams through the window as I type and covers my arms with it's warm light.  Perhaps God is reminding me that my sunshine is always with me in the love that we feel for each other.  We are loved eternally.  It would be nice if the sun would remain out today.  It's been raining on and off for more than a week.  We will be leaving Vancouver soon.  Heading down the coast, following the Sun on it's journey south.

Our first talk went well at the Maple Ridge School District Meeting of the Student Advisory Council.  We were given a ten minute time slot and in that time Anaya and I attempted to reach out and change lives.  We were speaking to about 20 high school students, teachers and the Superintendent of schools.  In order to make an impact and get attention I strategized that I needed some props.  I filled my hair with clips of many colors of fake hair.  The were very bright.  I had a rainbow of them.  Pink, Purple, Blue, Green, Yellow.  I put rainbow clips above Anaya's pigtails.

Approaching the table I introduced myself, and Anaya.  There were sounds of admiration from around the room.  I heard whispers of "She's sooo cute." and "She's adorable."  I smiled.

  "What is the first thing that you guys notice about me today?" I asked the gathering.

   "Your hair!" They exclaimed, almost unanimously.

   "That's right." I said. "I did my hair this way today because I'm here to talk to you about children with disabilities.  Like my hair, children with disabilities often stand out.  Sometimes they look different or act different than non-disabled people.  Often times people will treat them differently because of their disability.  I'm certain that if I wore my hair like this to a business meeting I would be treated differently too!"  There were giggles and murmured agreement from around the room.  Everyone was engaged.  I had the attention, the true attention of every single person in the room.

I told them a brief synopsis of Anaya's life and condition.  How she was born "normal" and lost all of her abilities.  I told them that inside of her is still that little baby who could see and smile and talk.  The one who was born to run and play.  I reached out to their sense of selves, to what they wanted, and showed them the children with disabilities want the same things.  I spoke about inclusion and what it means.  Inclusion means treating people with disabilities with the same respect as you would give a non-disabled person.  It's about seeing somebody for who they are on the inside. Letting go of the differences that the eyes may see.  I also told them about Universal Newborn Screening.  I explained that it made sense that we should test for all treatable diseases.  They agreed.

After I finished speaking many of the students asked questions about Anaya, and about us coming to speak in their schools.  I felt relief.  They were interested.  They liked it.  They wanted more.  The Superintendent thanked me, with a genuine sparkle in her eyes. We bid them all farewell and left.

I've been working on developing a profile website and packages to share with schools and organizations about my talks.  It's almost up and running.  I've been working on it while caring for Anaya.  As soon as it's running smoothly I'll share it with you.  I've been working on it all week. It includes a map of the towns and cities we will be visiting on Anaya's Walk to Save Babies.



View Anaya's Walk to Save Babies Tour in a larger map


 It's one of the reasons I haven't blogged much lately.  I've been quite busy.  Sometimes I wish I could blog with only my voice, as often my hands are full with Anaya.  I sit and hold her and sing to her, sometimes thinking about what I would write if I had my hands free to type...

I would tell you about all of the amazing people who help us everyday.  I would exclaim our gratitude again and again.  Because of their/ your help we are able to stay with our baby girl.  Caring for her and loving her each day.  Helping her have the best quality of life possible.  Managing her pain and her disease progression with love and intuition. I would like to thank:

Everyone that supported Anaya's birthday bash - the sponsors and the attendees
Everyone that participated or donated to the online auctions
Everyone who subscribes to the blog
Everyone who has given a gift through the donation button
The people who donated their time to help with packing, cleaning and moving
The men who fixed Anguard
Mike Coules for creating Anaya's incredible two year birthday video
Kristel Shimpf and all her helpers for the Healing Anaya Garage Sale
Everyone who attended the potluck or who has visited us here in Vancouver
Everyone who reads the blog and sends love and prayers for Anaya

 Living in Anguard, the 35' 1987 motor home allows us to be near her no matter what room we are in. Our expensed are acutally much less than they were when we were living in the house. There are no long stairways to carry her up, no division between one room and the next.  No matter where we go we always have everything Anaya needs.  Her oxygen equipment, medications, clothing, comfort.  Home is everywhere we go.  This is exactly what we needed to do.  I am thankful for the understanding and support that has been shown to us.

Again I say "Thank you! Being with Anaya means the world to me.  There is no place else I could possibly be.  My love for her brings me wealth of the soul.  Although I am poor monetarily I am rich in love and family."

Saturday of Love

This was our walk this morning.  Anaya was wide awake and she really enjoyed it.  She had another rough night, but after getting her meds and some chest physio she was feeling much better!

After that I took a little clip of Anguard to show you :)  It's like a small apartment on wheels.  I have it decorated colorful and child-like for Anaya.

I didn't have everything all tidy like I had hoped before I showed you all...but it's close and I know you are curious. We have everything we need in our cozy little home.

The potluck tonight was awesome. Anaya had a wonderful day. She was able to sit up in her chair for all of dinner and was awake and alert to meet everyone. We had an amazing spread of food. MMM...we all ate heartily and then I showed the group Anguard. Everyone had nice things to say. The positive energy of the people who attended the potluck was lovely to be around.

You know how sometimes being around a group of people can be draining? It didn't feel that way to me. It felt like a group of old friends. I have some thank You's..

Thank you Carey for bringing "The Salad" - It's sooo good.
Thank you Natalie and Geoff for coming early and helping to set up and clean up...you are a bird of my feather Natty...
Thank you Viviane Bomfin, family and friends, for the gift and the amazing cream puffs. I'll never look at another cream puff without thinking of those ones in particular!
Thank you Sheila and Damiane for bringing the greek and eastern influence, as well as a creamy potato salad.
Thank you John and Tony for being the pot of gold at the end of all rainbows.
Thank you to the children that attended.  They were all between the ages of 1 and 3.  Seeing you stirred the warmth of my heart.  The sadness mixes with the joy and creates rainbows of emotion.  Seeing Anaya interact with you and listen to your voices made my day.  One day she will run ahead as well...

Most of all I'd like to thank my friend Nicole.  She brought me my favorite flowers...sunflowers.  Being near her tonight was like going home to my childhood.  She reminded me of a time when I was safe and taken care of.  Now I provide the safety and do the taking care of... part of me wanted to crawl into her lap and cry.  She is so strong and beautiful.  Thank you Nix, for the flowers and for the Orca talisman.  I will keep it near me to remind me that my heart will guide me safely through...

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 floor...so 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.

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 kids...so 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

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.

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.
Goodnight.

Location:Castlegar, BC

Anguard

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

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.

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"

Godsend

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.

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

Healing Anaya Video