Saturday, October 29, 2011


The mist hangs lightly over the expanse of gravel.  Here and there you can see a trailer, outlined in the fog, but you cannot see beyond them.  The massive Oregonian trees in the next field are hidden from view.  The fog brings a feeling of closeness.  It's similar to the feeling I experience when I am surrounded by mountains at home.

I let the dogs inside from their morning outing.  They know that it's still quiet time, and lay down again to sleep.  Brent and Anaya also sleep.  He cradles her in the hollow of his arm, and she rests there in the arms of her father.  Secure, warm and happy.  They had a rough night.  It was Brent's turn to care for Anaya last night and she had a lot of trouble with her secretions.  She needed constant suctioning.  He was literally up all night with her.  About 5 am I took over so that he could get some sleep before our big day today.

Her breathing was quick and thick with bubbly mucous.  I lay Anaya over my chest and reached for the suction, flicking the switch and grabbing the tube with my left hand.  Gently I tilt her face upwards, and pull her chin slightly down with my left thumb.  Holding the catheter between the fingers on my right hand, I ease it between her teeth and over her tongue.  When it gets to the back of her tongue I arch the midpoint upwards, pointing the tip of the catheter down her throat.  Timing is everything.  She takes a deep breath and I slide it another inch down.  Now that it's in position I close the suction control valve with my left thumb, twirling the catheter from side to side with my right hand, while pulling it up and out of her throat.  A big gob of thick white mucous fills the tube and I continue to twirl and pull, until all of it has been sucked out, and the catheter is no longer in her mouth.

Her eyes full of tears, she takes a clear deep breath and thanks me with one of her happy sighs.

You are so welcome Anaya.

I love you.

Thursday, October 27, 2011

Spark plugs and aluminum chips

Well, it's been quite a day.  Anaya has been having a blessedly awesome day with her secretion management, but my heart is aching.  I feel down today.  I miss my older daughter Solara.  Her smile and radiant love have always been there to cheer me up.  Today she is hundreds of miles away with her papa in Calgary Alberta.  She's doing well, and she's happy.  I just miss her and I just want to wrap my arms around her and hold her.  Solara has been so strong these past few weeks.  We talk to her everyday, sometimes twice a day.  I put her on speaker phone so that she can talk to Anaya.  Sometimes Anaya responds with her little "I love you" sighs.  Sometimes she just grunts a bit...but hey!  What's a grunt between sisters?

I've been trying all day to think of a way we can get back on the road. Today it seems as though our fundraising efforts are stagnating.  Everyone I know has helped us out.  I've been spending hours on the computer, holding Anaya, and typing with one hand - trying to spread our links through the internet.  Trying to reach more people.  I think every member of The Anaya Initiative wrote into the Ellen show - but I have heard no response.  My pastor (Jim at Kootenay Christian Fellowship) has had lots of calls from Salem residents who want to know if we are "for real".  It seems as though these people are very skeptical of Anaya's condition, and our love for her.  Jim told me he assured them that he's known us for a while and yes, Anaya's sick and yes, we are for real.

I placed calls to the local children's hospitals and left messages for the seminar coordinators about bringing Anaya in and speaking about her disease to educate anyone who wanted to listen, but as of yet I have not heard back.  We had someone from a hospital called St. Judes offer to hospitalize and care for Anaya - and that's the furthest thing from what we want, although the offer was generous and appreciated.  A well spoken man named Troy called me, said he was a citizen of Salem and questioned me for half an hour on my integrity and faith.  He said he was considering helping us and that he was going to come and visit.  But then he never called back, and he didn't come visit. I was deeply saddened that he didn't come by to speak with us in person.

I'm positive 95% of the time.  I guess right now is that other 5%.  A fellow came by today, he's mechanicly inclined.  He managed to get Anguard's engine turned over and running ( what awful racket.)  There is such loud knocking coming from the engine you have to yell to be heard over top of it.  He did some investigating and found chunks of aluminum had actually been pounded off of one of the pistons.  He said it's likely because a valve stuck open and the piston was pounding against it.  He pulled the spark plugs out and the one was pushed shut.  There's supposed to be a gap in a spark plug. Heck, I was just suprised that he had the thing running.  We were told it would never run again.  I've got the chunks of aluminum that he pulled off in a ziplock bag.  Those are engine pieces.  Unbelievable.   He said that although he got it "running" it's not driveable. At least one of the cylinders has piston and valve damage that could cause another blow out at any time.  Those pieces of aluminum got stuck and stopped the engine when we broke down the first time.  As the piston wears away more chunks will fall off and the same thing will happen again.  We might make it 5 ft or 500 or even a few miles, but there is no way that Anguard will ever be reliable and safe.

For the second time we've had an engine replacement estimate ($12,000-$15,000) and for the second time we've been told it's not worth it.  They said we'd be better off taking that money and putting into something else.
We are flat out stuck.
But we are stuck in a place where we've been surrounded by love and support.  So many people have been so kind.  I even got a card from a woman who sent her love and prayers and a $1 bill.  That meant so much to me.  Obviously this woman doesn't have much to spare...but she cared enough to send what she could.  Later, I cried thinking about that old woman, wishing there was something I could do for Anaya that would make her better.  Wishing I could meet the dollar bill woman and find out more about her life.

There's a reason we are here.  Already we have touched the lives of a few, and Anaya has spread her baby love and lessons like seeds on the wind.

Brent is making dinner and Anaya is wide awake.  I'm going to try to shake off this dreary feeling and put on some music and dance with Anaya.

We're all on the right side of the ground, after all.

Mama's Call to ACTION!

This is a MAMA's Call to all other MAMA's! Take action!

(I have written to Ellen about our situation.  We need all of the help we can get.  Ellen often helps people.  We are asking her to help us.  

Please help us get in touch with Ellen by clicking the link, filling out the form and saying you want Ellen to help Baby Anaya.  You can even use my letter, or parts of it.  Here's what I wrote.)

"We are out to change the world - but we broke down!

Our daughter, Anaya, is two years old and has infantile Krabbe Leukodystrophy - a terminal brain disease that is usually fatal by the age of 13months. Over the past two years of taking care of our baby girl we have learned to look on the bright side. Today we are all alive! Today she is still breathing! Today we will give our baby girl the best day possible! We stopped grieving and started living.

We decided that we would take Anaya on a speaking tour and head south. (She doesn't do well in the cold winter). We stop in hospitals, medical schools, children's schools and churches and speak about Krabbe Leukodystrophy, taking care of a severely disabled child, being accepting of kids with disabilities, and our Faith that we all have a purpose to fufill. We also advocate for newborn screening. Anaya could have been treated if she was tested at birth.

Unfortunately our motorhome broke down in Salem Oregon. Our motorhome is our Mobile Care Unit for Anaya. We can't go on without it. The wonderful people of Salem Oregon have taken us in and run a story on us in the paper. We have been speaking in their community and sharing our story and educating people. A local dealership offered us a Handicapped Equipped motorhome for half price. We have raised $12000 but we still need $45000.

Please Ellen, help us change the lives of thousands of people. Take us on your show - or even just send some help our way!

With hope,
Camara Cassin 

Now if everyone would please write to ELLEN and tell them that you know I applied and that you want to see Baby Anaya on the show and WHY!

Click here: 

SHARE! The Anaya Initiative

Do you want to help financial instead of writing to Ellen?  Click the Give Button.


Wednesday, October 26, 2011

Bright and cheerful :)

Her eyes are wide and they stare towards me.  She's listening to the music that is playing behind me on the computer speakers.  Female vocals harmonize and sing songs of sea animals.  Their joyous and uplifting voices fill the cabin of Anguard (our broken down 1987 motor home).  It has been amazing how awake she has been for the past two days.  We had started a new medicine to help control her secretions and the dose was too high.  She was sleeping pretty much all day and night, waking up only to choke and falling back to sleep.  We consulted one of her doctors and decided that we would try lowering the dose.  We gave her the lower dose in the morning and again she slept all day...but she was awake all night!  The next day we gave her the smaller dose in the evening at bed time and she was awake all day the next day.  So that is our new strategy.

Robinol, 1ml, before bed.

She's almost at the perfect secretion level.  Not too wet, not too dry.  Just right.  It's always a balancing act, but one that we are used to.  Some days are better than others.  The last couple days have been amazing.

Her eyes are darting around now, listening to the music and the sounds of what is going on around her.  It must be so difficult to be blind.  She must be really in tune with what each sound means.  A kitchen cupboard closing, the sound of the screen door, the coffee percolating (one of my favorites), the puppy playing with a squeaky toy - there are so many sounds to hear and enjoy.

This morning we will have bath time.  It's one of her favorite things.  She stretches out her little body and sighs in contentment.  I hold her and allow her time to relax and float in the water. Floating relieves the pain in her joints and takes away from the constant pull of gravity on her little limbs.  It's a beautiful sunny day outside and I have a feeling that it's another one of God's Blessed days.  Something wonderful is going to happen today.

Anaya's making noises now.  It's like she's trying to sing along with the music.  She's so sweet!  I bend over to kiss her, stroking her angel-soft hair.  I tell her I love her.  She's having a good day.  We are alive and well and it's a beautiful day.  Please don't pity Anaya.  Please don't pity us. This is the life that God gave her and it has value and a purpose.  The challenge given to us is to have compassion and empathy.  To show unconditional love and teach and educate others.  There is beauty in these moments.  We take the time to see them, instead of focusing on death, grief and loss.

To live in the moment, focus on the now, and have faith.

We are still working on raising money for Anaya's handicapped accessible used motor home. (Mobile Care Unit). So far we have raised about $12000 and more people join to help every day. Only 45,000 to go! If you would like to help out please share this post with others!  We've been told by Hunter's Hope that unfortunately they can't give us a wish gift.  Not because they don't want to - but because their wish gift fund has already been used up for the year.  Although we were hoping for that, we won't let it get us down.  Hunter's Hope has been an amazing partner for us in our campaign to spread the word about newborn screening.

We still need to get back on the road to take Anaya south to where it is warm and she can be comfortable and go for long walks...and we want to get out there and share our story, and awareness with the world.  We believe that God is with us on this mission, and that things will work out the way they are meant to.

 Click the link below if you'd like to help us get back on the road.
On the give button below there is a video embedded of the mobile care unit we are trying for.  Check it out!


Saturday, October 22, 2011


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.


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 @

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

Tuesday, October 18, 2011

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

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 
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

Monday, October 17, 2011

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.

Saturday, October 15, 2011

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!

Sunday, October 9, 2011

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!

Friday, October 7, 2011

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 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, October 1, 2011

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 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...