Monday, November 28, 2011

Celebration of Life

Yesterday we celebrated Anaya's life.  It was so beautiful, just as she was.

I'd like to start with thanking all of the people who helped.  I wish I had a group picture of the wonderful people who decorated and spent hours preparing for the event.  Our whole family loves you all and our gratitude will remain always.  You made the setting for Anaya's memorial incredibly special.

The pavillion was lovingly decorated with rainbows and balloons of all colors.  The love in the room was palpable.  Anaya's spirit was with us, of that I am most certain.

I stood strong for my baby girl

At first I told a story and then spoke about Anaya.  Then Brent spoke.

 A beautiful slideshow came after that.  It was so lovely and everyone was in tears.

 Just in time to bring us back up, Carey's video montage of Anaya dancing had us all dancing and rejoicing with Anaya in our hearts.

Baby dancing at Anaya's celebration, definately in the spirit of the event!!

Bobs and Lolo sang some of Anaya's (and mama's) favorite songs, and the rainbow balloons fell beautifully from the ceiling into the gathered crowd of laughing children.

Solara and I with Bobs and Lolo (Anaya is with us too)
The Scrapbook craft table

We had a scrap booking table where 200 pictures of Anaya, a bunch of paper and crafting supplies awaited participants.  The most beautiful memories came together from the love of each hand, creating a page for our Anaya memory book.

Solara couldn't get enough of the craft table.  She made three different pages of memories of Anaya, herself and I.  All of them beautiful.  All of them bringing me to tears.

My darling Solara.  She has been such a comfort to me.  I'm so glad to have her here now.  She is happy too.  She says she doesn't yet miss Anaya, but that she knows that she is in a better place.  I let her know that I understand and that it's okay to feel what she's feeling.  When she is ready to grieve I will be here to hold her, and until then she keeps making me smile.

Solara Creating a memory page

There was also facepainting.  The joy, laughter and chatter of children was everywhere.  Such an incredible tribute to Anaya's life.

Solara, Camara, Rainbow Baby Shand and Meghan Shand
At the end of the event Brent and I surprised everyone by declaring our love and commitment to each other in a simple handfasting ceremony.  I'm now married :)  Some people would ask why we chose to do it this way and in this timing.  The answer is very simple.  Anaya was made of our love, and our love was strengthened forever by our experience with Anaya.  Our close friends and family were in attendance either physically or by heart, and it will be a day that will remain special our whole lives.  We've never wanted a fancy wedding, only something meaningful.  And that's what we had.

The Cassin-Potts 

I will post photos of our vows when I have some :) I wasn't taking pictures yesterday...

When we arrived home I collapsed into Brents arms and we sobbed our sorrows out together.

Being as how we all have been fighting colds this week, we've succumbed to it.   We need rest.

I have so much to share with you, but for now I need to get well again.

Goodnight Readers.

Goodnight Anaya - We love you 
Your bright soul shines
so colorful around us
forever you are remembered
in rainbows
and light

Saturday, November 26, 2011

Eve of a new day

Sweet little Angel Anaya has been busy showing rainbows to people all over the world and appearing in their dreams. She has been reassuring people and even appearing to play with children of her fans. She is an amazing little spirit. We miss her so much. Her beautiful face and softness tug at my heart. Her celebration of life is tomorrow and I feel both happy and sad at the same time. My little love has flown to heaven and is free. She would want us to celebrate.

We have found a place to live for December 1. It's in the lower mainland so that we can really focus on educating people and advocating to save babies from this devastating disease. I'm working on publishing the blog as a book and Brent is creating a children's story of Anaya's life to spread awareness.

Can you help us get settled in our new home?
Or maybe just share this link? Thank you.


Wednesday, November 23, 2011

Vigilance and Shock

You don't know me, but...

This is the quote of the past ten days. I have received hundreds of emails that start with this line. It is both beautiful and heartwarming how many people have reached out to send their condolences and tell me how much Anaya has influenced their lives. How they will never forget her.

I could never forget her.

I've spent the last couple of days in a state of quiet vigilance. I'm not sure which way to go or what to do just yet so I'm staying put until I figure it out. I've been praying and asking for guidance, both from God and from Anaya. There are times that I cannot hold back my grief. My heart aches and I feel as though I am suffocating. I even get guilty thinking that I didn't do enough for her - or that we shouldn't have taken her off life support so soon. I feel bad that I didn't take her little baby feet in my hands that final night and given her a massage. I think that I was given extra strength to get through that period of time. I know that we did the right thing and I do my best to quash my negative thinking.

But when I think about her beautiful little body, slowly going mottled and cold I cannot stand it. I feel nauseated with sorrow. I try to focus on the rainbows instead.

It is very apparent to me that death has not ended our connection, but changed it. She asks me to have more faith than I ever have before and to move forward as quickly as possible. I'm willing to do the work - I just don't know which direction to start out in. Should we move back to Nelson? Should we stay in the Lower mainland? For now I think just being present with Solara and spending my time with her, loving her and playing with her is what I need to do. Solara really wants to move back to Nelson. She misses her friends and her school. I am taking her feelings very seriously. I miss Nelson too. Both Brent and I want to do what's right. We want to make a difference and finish what we started. I also know that I need to write. Another message I keep getting from Anaya is that I'm supposed to share what she shows me in my dreams. She says there is more to it than just newborn screening. That there are big changes going on in our world that people should know about.

I almost feel as though I could reach the mama's through writing if I really gave it my all. Once the memorial is over maybe I'll be able to focus more.

Saturday, November 19, 2011

The mind of God with Pooh and Piglet too!

I fell asleep imagining holding her against my chest, using my pillow as something to hold in my arms.  I remembered her weight pressing on my ribs and I inhaled the smell of her.  I surrounded myself with the love I have always felt when cuddling my little love and allowed my thoughts to drift off into space.  Her hair, her cheeks, her eyes that could see, her beautiful heavenly smile.  I fell into the swirling moments, mixtures of memories and imaginings.  Soon I was lost in my dreams.

I was in the children's hospital in our bed at ICU.  I was holding Anaya, and she was dying, but her heart was beating so strong and fast against my chest that I couldn't help but think of a hummingbird.  Suddenly the heart monitor flat lined it's high pitched noise and I knew she was gone. I closed my eyes and the beeping of the monitors and the bustle of doctors and nurses were diminished. Be still my heart. I'm coming with you.  Suddenly I was falling at an incredible speed and my mind went blank.

I was seeing stars.  Not stars like you can see at night.  At night you can only see a few million.  I could see millions and gazillions of stars, some further away than others.  They came in many colors.  Red, blue, yellow and white just to name a few.  I found myself sitting cross legged on a clouded glass surface.  Next to me sat Anaya. She smiled at me.  I heard her voice reciting the card that I got her last year for Valentines day.

How do you spell love? Piglet asked Pooh.
I don't need to spell it. Pooh said.  I just feel it.

 I turned to sweep her into my arms but stopped just before touching her.  Her shape was changing.  She appeared older than before.  She was growing, aging before my eyes. Her hair flowed loosely around her shoulders and her face was thinner, longer. She passed through childhood and became a young woman with blushed cheeks, breasts creasing the front of her white dress. She continued to mature passing through decades rather quickly.  Around her eyes were feathers of wrinkles. Long hair shone gray and white. Her hazel eyes looked into mine and she smiled.  I could feel her unconditional love, sense her eternal soul and I suddenly felt very, very, young.

Welcome. Her mind-voice was melodic and sweet, yet firm and mature.  Awed, and in shock, I responded.

 "Namaste" (I see the god-soul within you).  She chuckled.

Namaste Mother. 

There was a flash of blue and the white gown she was wearing erupted in a fountain of fabric, flying off into the starry infinity.  Remaining in the center of a ring of cloth was my Anaya.  She stood looking at her little chubby fingers.  I remained where I was, amazed at the display.  Amazed at her beauty.  In the light of the stars her skin was radiant.  I could see her incredibly long eyelashes blinking as she focused on her hand.  She raised her eyes and looked at me and broke out in a grin.  She rushed towards me and I took her into my arms.

Mama!  She said with satisfaction.
"Anaya!"  You are amazing!" I exclaimed.

I am all of me.  She said.  You are all of you, too.  Here, in this place.  It is a place of all that was and all that ever will be.  

"Where are we?" I asked, shifting her to sitting on my hip.


I blinked.  "Akasha? I've never heard of it. Are we on a different world?"  She felt real enough.  Her dress was rough against my arms, her eyes sparkled.  She reached up and took hold of my face in her hands.  They were soft and warm.  Suddenly I understood.  I understood why sometimes I have dreams of things that happen, I understood why some people can see into the future, and some into the past, and some to different places.  Akasha is the place where there is no time.  The space between spaces and the consciousness that gives birth to thoughts.  The complex and chaotic organization of probability and superposition.

"Where is God?" I asked.

Oh Mama.  She pursed her lips and raised her eyebrows, opening her eyes brightly.  She looked incredulous and I burst out laughing.

God is here.  Standing with us. She whispered into my ear.

Chastened, I peered around.  I saw nothing but a gazillion stars, the glass platform, Anaya and myself.
"I don't see anyone." I whispered back.

She pouted and squirmed to get down out of my arms.  Setting her down lightly on the polished surface I noticed that her footsteps did not make any sound.  She walked towards the edge of our floating platform.  Each step she took she got larger and older, becoming again my elder.  She raised a firm adult hand and beckoned me to join her.

Look there. Don't forget. She pointed.  I turned my gaze on a cloud forming out of the stars.  Each speckle of light took up a spot and formed an organized unit of space.  It was a window of sorts.  The outside shone electric blue and the inside led to a raining grey sky. Through the blue window I could see a name etched on the wet stone.

Sara, Alberta. 

There was a clap of thunder and I awoke.

I sat up, dazed.  I woke up Brent, telling him I dreamt of Anaya again.  He "mmhmmmd" and went back to sleep.  I closed my eyes, trying to remember my dream and every detail from start to finish to put down in writing.  Who the heck is Sara Alberta? or is it Sara in Alberta?  Is it a woman or a baby?  Is it now or in the future?  There are too many questions.

I got out my computer and searched "Akasha."

 "Akasha is the fifth element, spirit. It is the basis and essence of all things in the material world; the first material element created from the astral world, Akasha is that which gives space and makes room for the existence of all extended substances. The word Akasha as an adjective, through the use of the term "Akashic records" or "Akashic library", referring to an ethereal compendium of all knowledge and history. The akashic records have in instances been referred to as the mind of God." 

The mind of God.  

I tossed and turned the rest of the night.  Unable to sleep with the visions revolving in my memory.  I don't know what this has to do with me, but Sara Alberta - you are on the mind of God.  Maybe I'll get an email from you and I won't have to go out and find you.  Now wouldn't that be something.

I got out of bed and headed for the fridge.  I needed something sweet and amazing.  I reached in and grabbed it.  A Beard Papas cream puff.  Heavenly I thought as I crunched through the chocolate shell into the pastry and custard beneath.  I remembered the time that Brent gave Anaya some of the custard on her tongue.  I smiled.

Getting again onto my computer I noticed an entry from a woman named Bunmi.  This is what it said.

"Dear mama, 

First, I love you. Second, your baby isn't really gone. My friend Emma K. a mom activist in Canada shared your link with me. I was immediately touched and my heart broke. I write for Mothering and decided to share Baby Anaya with Mothering Magazine's website. 

Writing this blog was the hardest thing I've written in my career because of the depth of emotion it touched within me. I cried the whole time. I wasn't sad, it's hard to explain, I was moved.

And yes, sad. 

I'm not particularly religious but I am spiritual and try to stay sensitive. 

As I wrote, I felt your dear baby, mama. I felt her at my right, watching. She was my editor. I felt the need to send this to you before sharing it on my page. Do you have any edits or additions? 

Anaya is so funny. She's a spark, isn't she? As I was writing about The Anaya Initiative, I was going to call it an "idea" and she was pretty insistent about calling it an "organization"- something with more structure, something with legs. Not just an idea. A force, something big. 

The quote the end, isn't my doing. Finding the quote took more time than the entire article because your baby doesn't feel as if I take direction very well (she's right). I kept searching and searching for the right quote, kept googling and she was being so patient, like "C'mon now." I could feel the spirit of the quote but couldn't find the words. Until Winnie the Poo! I saw piglet and poo in my mind from behind, holding hands walking side by side the way you too are and will. 

Nothing can break the bond between mother and child. It was not created on this earth. It is eternal and real. You are bound together by the same love that rises the sun every day. Let the ache pour out of you- keep expressing it. She's here, mama. She's here. She's so here it's ridiculous. She's like the project manager in her insistence for The Anaya Initiative to move forward. It's a miracle. 

I love you. 

Now what really struck me about the article she wrote (other than I didn't take that picture!) was the quote at the end that she says Anaya insisted was the one she had to put there.

"“If ever there is tomorrow when we’re not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart.. I’ll always be with you.”

 -Winnie the Pooh

It appears Anaya is linking her spiritual appearance to Bunmi with my dream - using Winnie the Pooh quotes.  Only her and I could know what that meant to me.

I think I'm supposed to start a new blog, a blog of my new lessons with Anaya.  I feel detached from the memorial planning happening around me.  I know that she's not gone.  She's just not in her body anymore.  We've got to start planning how to get out there.  How to tell the mamas.  How to save the Krabbe Babies.

Immediately after writing this I was contacted by a woman named Shannon.  At the moments of my sitting and writing she had filmed a rainbow that she could see from her car.  Playing on her car stereo in the background is a song from the Winnie the Pooh Movie.  These are the lyrics.  I will post the video to you tube:

So Long Lyrics

It's not complicated,
Or very hard to grasp,
But every time I see you I laugh.

I wont get too sappy,
I've had no epiphany,
I just enjoy your company.

You test my nerves it makes me stronger,
So can you bother me a little bit longer?

Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend.
Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend like you.

Well I could dot the Is,
And you could cross the Ts,
‘Cause letters alone are lonely.

Well I could be the blossom,
And you could be the bee,
And then I could call you honey.

You test my nerves, it makes me stronger,
So can you bother me a little bit longer?

Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend
Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend like you

Some like to be
Alone independent and on their own
All alone I guess they're free,
but not me,
not me.

Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend.
Hate to say goodbye, goodbye
And I Hate to see the end, the end,
‘Cause it's been so long since I've made a friend like you.

Hate to say goodbye, goodbye
And I Hate to see the end, the end
‘Cause it's been so long since I've made a friend like you,
Yes it's been so long since I've made a friend like you,
Yes it’s been so long since I've made a friend like you,
Yes it’s been so long since I've made a friend like you.

Wednesday, November 16, 2011

Anaya's Spirit Visits Heather

"I needed to let you know this. 

Today after I read camara's blog I was loading my kids up to go to the store for groceries. The wind and leaves were blowing, and all I was thinking about was Anaya. My heart ached for her and her mom. 

Suddenly the wind rushed up into a big gust, hundreds and hundreds of leaves swooped together and danced around into this huge funnel. Both my kids stopped and my baby said 'ooooh' and pointed. From the shadows the sun shone through onto my cold cheek. All I felt was Anaya.

 I touched my daughter Molly's head and something, I swear it felt like Anaya comforting me it was so  told me that my daughter was going to be strong and courageous in her life. I touched my son ricky's head (who has autism),  and I felt overwhelmingly 'he will be ok, he will be happy' and I cant explain this and I am not religious but I know it was anaya. I felt her everywhere. She was the wind. She was the sun. Whe was the leaves. I wish I knew how to explain the feeling because in 30 seconds the clouds covered the street again, the leaves stopped, the wind died down. It went back to normal. 

I have been rattled all day trying to explain it to my husband....trying to understand it myself. I have had so many fears about my kids being hurt and anxieties over life/people I love leaving in the last 6 months. the comfort that that wind brought was incredible. It felt like Anaya was right beside me, like an adult voice almost consoling me, telling me that my family was going to be fine. I felt total peace. I dont want to bother camara right now but I hope one day she will know that her daughter Anaya, came to me on the wind. I dont think I will be able to see leaves blow again and not think of her."

Heather From Calgary

Tuesday, November 15, 2011

The Visit

Last night before I lay down to sleep I prayed that I would be allowed to see Anaya in a dream.  To know that she was alright.  To my surprise it actually happened.

There was a patting on my shoulder.  The patting turned into a tugging on the sleeve of my night shirt.
  Mama, Mama wake up! My eyes flew open and to my incredible shock she stood there beside the bed. Her golden hair hung in wavy curls around her chubby cheeks.  She wore a simple white dress.  She was smiling.

(Not Anaya - but similar in looks)
"You're talking!" I exclaimed.  "You're alive! It's a miracle!"  I reached down a picked her up.  She weighed nothing and lifted into my arms like a feather.  She put her arms around me in the sweetest embrace I've ever felt.  I burst into tears.  Sobbing uncontrollably I blabbered on about how it must have been some kind of nightmare and that we had to tell everyone that she was alive and that God had worked a miracle and that she had been healed.  Suddenly I felt her warm hands on my cheeks, she lifted my face so that I was looking into her eyes.

You will see... I heard her voice whisper, although I did not see her lips move.  I was entranced looking into her beautiful hazel eyes.  They began to change color and I could see the sky, the clouds, the sun, the stars, all flying across her eyes like a time lapse.  The picture settled and I could see the reflection of a meadow and a rainbow. Now close your eyes.

I closed my eyes and felt a sense of whirling vertigo.  For a moment I opened my eyes and I could see a vibrant swirling rainbow all around that was whooshing by at an incredible, impossible speed.  I felt Anaya's presence and her fingers closed my eyes again. Don't do that! She said tartly.  I was just so blown away by everything that I couldn't help but chuckle.  My daughter, my silent little love, had just given me attitude.  The whirling sensation stopped.  I felt her little hand grasp mine and lead me forward.  You can open them now.

We were in the meadow with the rainbow.  My feet were warm on the soft green grass.  Wildflowers grew everywhere.  There were children running and playing with each other.  Children of all nationalities and colors.  "Is this Heaven?" I asked, looking down at her.

She raised her eyebrows. Mama, don't be silly.  This isn't Heaven.  You can't go to heaven yet. This is where the souls go when they are waiting to be born.

"You mean all of these children haven't been born yet?" I whispered in wonder.

They are waiting for their turn. She replied.  It occurred to me that although I could hear her voice I still hadn't once seen her mouth move.  She tugged on my hand and turned me around.

We were now standing at a large window looking down a white corridor with blue and grey tiled flooring.  Along the walls there were chairs and in the chairs there were women of all nationalities and colors.  All appeared to be in different stages of pregnancy.  They sat as though in a doctors office.  Some reading magazines, some on cell phones, some knitting, others sleeping.

These are their mothers.  They don't know that their babies have what I had.  Tears streamed down her perfect cheeks and her fat little lips trembled.  My heart ached.

"We have to tell them!" I reached out and touched the glass.  It wouldn't move.  I pounded on it.  I yelled and screamed hoping they would hear me.  Not a one of them indicated that they noticed me at all.  I cried in my frustration and sank to the floor.

They can't hear you mama.

"We have to tell them, we have to." I sobbed.  She nodded.  Her curls bounced. She was so beautiful through my tears that my breath caught in my throat.  Once again I was mesmerized by her eyes. I could see myself standing in front of a group of people, behind me was a banner that said "Anaya's Tour to Save Babies"  I blinked.

"You're not really here, are you?" I asked, suddenly realizing the enormity of this whole situation.

We are here, I am here, you are here.  We are in the space between spaces, in the place where there is no time.  I tried to comprehend that and decided to store it away for further thought.

"Can I stay here with you?" I asked.  She looked at me with her big hazel eyes and shook her head.  My heart sank and I felt desolation and despair.  For the second time she lifted my face with her chubby little hands and I looked into her eyes.  My tears obscured my vision.  "But I need you" I cried, realizing as soon as I spoke it how selfish I was.

Mama, mama.  I am with you right now.  I am always going to be with you.  You have to find the other mamas.  You have to tell them.  You have to keep going.  I will help you. When you need me, pray to speak to me in your dreams.  Now close your eyes.

Again came the whirling sensation and the nauseating vertigo.  I couldn't feel my body, only an incredible feeling of vastness.  I had a feeling that if I opened my eyes I would see nothing and I wouldn't exist.  I felt a sense of alarm coming from Anaya and I resisted the urge.

Suddenly I needed to pee. (I know, but it's true).  I opened my eyes.  I was back in bed.  I heard an echo of a whisper.


It was no ordinary dream.

Anaya showed me what I have to do.  I have to save those babies.  I have to tell the mama's.  I have to get the word out.  I have to keep going.

I searched for pictures online to show you kind of what Anaya looked like in my dream.  She did not have wings, nor a halo...but definitely glowed with ethereal beauty.  These are kinda similar...


Monday, November 14, 2011

Rainbow Day

Yesterday was rainbow day.  Why? You may ask.  Because Anaya crossed over the rainbow bridge, became one with everything and is with God and the Angels.

Three days before I had my very first dream of her dying.  The very first one.  I was so confused in my dream because I couldn't figure out when it had happened or why I couldn't remember it.  The next morning I met a woman who had just lost her baby girl Payton a few weeks before.  I spent a whole day with her.  This wasn't coincidence.  This was the universe and God preparing me for what was coming.  I can see it now, perfectly orchestrated.  God sent me my dream to make my fears real and God sent Cortney to assure me that I could live through it when the time came.

I held my little love for hours while she was on life support.  I kissed her face, her fingers, her toes, her lips.  I wiped her tears from her eyes.  I couldn't stand forcing her to stay.  I wanted to set her free. The hardest part was waiting for everyone to get there.  When the family was united we made the decision unanamoisly.  We removed her bi pap mask.

She was so relieved she gave one of her "Thank you" sighs.  We each took turns holding her.  The mask came off at 12 noon.  We gave her a bath - her favorite thing!  Her sister read her a book.  I played with her hair.  Daddy played with her toes.  As her breathing became more laboured we knew the time was drawing near.  I lay down on the bed and placed her in her favorite spot over my heart.  There became long pauses in her breathing.  Then she would gasp a huge awful breath and let it out in a long sigh.

I love you mama
I did my best mama

I told her how proud I was of her.  How many lives she touched.  How many babies she is saving.  How many parents love their children even more  because of her. I told her she needed to go.  To stop fighting and allow herself to be carried away by the light. I told her I was sorry I didn't get her to the sunshine.  I opened my heart as wide as I could and envisioned the sunshine of my soul enveloping her and keeping her warm.  She took her last deep breath and let out the most beautiful baby sigh I ever heard.  There was no pain in it. It was the sound of freedom, relief, joy.  It was the sound of my baby crossing the rainbow bridge.  Her heart stopped and she was gone.

We were all huddled in the hospital bed, holding her beautiful body.  Kissing her soft skin for the last time.  Touching her hair, her cheeks.  I kissed and kissed and cried.  All the strength that had infused me during the two hours of the death struggle left me and I collapsed into my agony.  The tears poured down my face and I sobbed.  I gently cut a braid of her hair that I will always keep to remember her strength, her bravery and her incredible softness.

Oh my baby.  Oh my baby.  I'm going to miss you...

Please give me the strength to carry on and do what I have to do.

Dear Readers:
We are planning on online memorial service that will be streamed and it will also be re-playable so you won't have to worry about missing it.  It will be wednesday or thursday and there's a crew of people working on it and I don't have the exact details yet but I'll be sure to let you know.  I do know that the theme is **Celebration! LOVE! Rainbows and Dancing**  I want people all over the world to wave their rainbows high and shout their love to the sky.  I want there to be dancing I want there to be joy.  Anaya MADE IT!  She graduated with honors!  She did a great job.  Let's show her how proud we are of her!

Thank you everyone for your thoughts, love, prayers and messages.  Anaya is very well loved.  I am humbled to have been able to share her lessons with you.  She was my teacher.  I was only her messenger.

Sunday, November 13, 2011

Setting Free

They said it will take a while.  We removed the mask and are now just giving her love and comfort.  Maybe God will present our Angel with a miracle.



Another moment with my little love. Forever embedded in my heart.


This post is short.  Time is short.
Anaya's lungs stopped working.  I gave her mouth to mouth.  We took her to the hospital, hoping it was pnuemonia and treatable.  They intubated her in order to keep her alive.  They took excellent care of her.

We were transferred to BC chldrens.  The new chest xrays show that Anaya is unable to expand her lungs on her own and that it is not pnuemonia.  If we take her off breathing support she will die.

Brent and Solara are on their way here.  My phone is not working.  I'm in the BCCH ICU.

For updates please keep looking at The Anaya Initiative 

And if by a MIRACLE of God she surpassess all odds please help us get her to the Sunshine before she dies by going to and make a donation.

With all our love and prayers

Friday, November 11, 2011

Life and Death

Anaya was on the brink of death twice yesterday.  They call it respiratory arrest.  Like cardiac arrest.  Only in the lungs.  Her lungs stopped moving.

I gave her mouth to mouth.  She needed a lot of help. Her face was white.  Her lips were navy blue, her fingers and toes where blue.  I could have let her go. I asked myself if it was time.  I considered just holding her close.  I didn't.  I went to work with recussitation and I saved her life.
We took her to the closest hospital.  She went blue again.  They asked me if we wanted to let her go.  We didn't.

This time they saved her life.  They inserted a breathing tube to get air in and out of her lungs until she can breath again.  They took an xray immediately.   Her chest xray was awful. Both lungs were completely inflamed and fluid filled.

Immediately we started IV antibiotics and once she had the breathing tube in she could finally get enough air.  She woke up and was bright and alert.  Oh my baby.

In the past 24 hours she has improved dramaticly.  She is instigating her own breaths and her chest x-ray from today is much much better already than yesterday.  There is more air and less fluid in her lungs.  Praise God.   Thank you all for praying for Anaya.  It is working miracles.

They say she should be well enough to come completely off the breathing tube within the next day or two.  I am hoping and praying that she will continue to be the little warrior that she is and that she will breathe  on her own without difficulty once this infection is under control.

I want more than anything to make her final days comfortable and beautiful.  I want her to feel the sun on her sweet cheeks and the breeze in her hair.  I want her to hear the birds and dip her precious baby feet in the ocean for the first time.

I did an interview today about Anaya and about newborn screening.  It will be on KOIN channel 6 at five and I'm hoping it will help to save the lives of babies.  I'm hoping that it will help us find more Angels to get Anaya south for the winter in a well cared for environment.  At this point I don't care how we get there.  I just want what is best for her.  I just want to give her joy.  She deserves it.  She is an Angel of God on earth.  Pure innocent love incarnated.

Anyone who would like to contact me (Anaya's Mama) Can do so by calling 503-383-2314 or emailing  I'd really like to hear from Ellen Degeneres or any other philanthropist that would be willing to help us give this wish to our baby girl.  Thank you.

Write to Ellen about Anaya !

Ellen ACTUALLY checks her own Tweets!  Maybe you could take a second to tweet her?
She will see your tweets about Anaya if you include @theellenshow in your tweet!

That's all I can muster.  Please God grant us this small thing.
I'm going to cuddle my baby who is ALIVE today and is recovering from this pnuemonia.  My little love.  My precious baby girl.

Monday, November 7, 2011

Ashes on the wind

Her breath comes in soft little mews.  Her mouth is open slightly, her fat little lips are dark pink, indicating a good oxygen level in her blood.  Little blond ringlets spring out from behind her ears, framing her face with a golden halo.  My little love.  My baby girl.  She is so beautiful to me.

Suddenly her eyes pop open wide and she gasps in pain. Her mouth opens wide in a silent scream. I reach over and grab her hand, pressing firmly on the meridians that run to the cranial nerves.

    "It's okay Anaya, Mama's here. Oh baby girl, it's okay, it's okay. You're doing a great job.  It will be over soon.  In a few seconds it will pass." I assure her.

Today is the third day of this.  This horrible new development in Anaya's nervous system.  It is spontaneous nerve pain.  It happens in demyelinating conditions such as MS, and leukodystrophy.  I've been told that nerve pain is agony.  Please God spare my baby girl.  A moment ago I read up on research they are doing on spontaneous nerve pain.  Researchers actually induce demyelination in mice and then torture them while measuring their nerve impulses.  Reading it made me sick.  I couldn't finish the article.  Apparently their findings were that using cannibinoids "THC" reduces nerve pain.  Anaya's had that medicine before - and we stopped using it because it made her so sleepy and dopey - but then again so does morphine.

The pain passed and she immediately falls back asleep.  I stroke her head and give her a kiss.  How many times have I kissed her beautiful chubby cheek?  How many kisses have I left on her brow?  If only each kiss could heal a little bit... I think they do.  She is so soft.  I often press my cheek to hers, wrapping my arms around her in a hug, just to feel her warm softness.  I love her so much.

Today I feel I am failing in what I set out to do for Anaya.  I wanted her to be able to enjoy the sunshine and be outside, maintaining her health and quality of life.  Instead we are inside while the wind howls and the clouds swirl with the coming rainstorm.  Last night we stayed in a hotel room because the acreage that we were staying at became uninhabitable for Anaya when the neighboring development decided to burn about 100 tons of waste brush, leaves, trees and such.  The smoke poured directly from the 20 or so burning piles of brush down the hill - directly to where the house and the motor home are.  The fire started when I was out.  Brent and Anaya had been unable to leave while I was out getting groceries and when I returned we immediately evacuated Anaya out of there.  She was having a hard time breathing.  As soon as we got her to fresh air her color returned.  I called a lady I met recently named Pam who manages a hotel here in Salem and she got us a room in her hotel.  The Shilo Inn Suites is known for "Affordable Excellence."  The exterior and lobby are clean and humble, however, the rooms are tasteful and comfortable.  The pups are even allowed here.  We met two chihuahuas in the elevator.  They serve coffee in the lobby that is fresh and delicious.  They even have a pool.  When Anaya is feeling well enough I hope to take her for a swim.  She loves the water.  Thanks to Pam we can stay here as long as we need to - without spending any of the money we raised for Anaya's new mobile care unit.

Brent has just taken the van to go get some more of our needed items out of the motor home.  You wouldn't believe the pile of stuff we have to take when we go somewhere overnight with Anaya.  That's why a motor home is so perfect for us.  Everything we need is wherever we are. 

List of stuff we must have overnight...
Oxygen condenser (40 lbs)
Oxygen bottle filler (30 lbs)
Meds in med bag
Frozen milk in cooler
Clothing for mama and papa
Clothing for Anaya
10 receiving blankets
Diapers / wipes
Feeding tubes, bags, pump
Barrier cream
Stoma ointment
Ankle foot orthotics
Suction machine
Plug ins for suction, feed pump, oxygen machines, computer, phone.
Warm blankies
Anaya's special pillow
Story books.

 We need to get Anaya to the south.  I've been praying that God will show us the path soon. We already have 200 Angels and we only need 3300 more! That's not that many people!  (Our idea is that we would have enough to get Anaya's mobile care unit if 3500 people each give $10 towards it). More people than that attend a single football game. I have faith that things will work out they way they are meant to.  I need to remain strong and be patient.  Anaya has taught me patience and living in the moment.  Right now I am going to practice that.

I am going to braid her hair and read her "The Mouse and The Motorcycle".  She loves being read to. Then I am going to massage her little muscles and help to work her joints so that she remains as relaxed and pain free as possible.  Her quality of life has always been my highest priority.  She is my little love.  I would do anything for her, give my life for her.  If only it would help her.  All I can do is love her and do my best to provide the very best life I can in the time that she has.

I will shine my love on her and keep her warm in bed for now.  How I wish it was nice enough to take her for a walk outside.

Anaya's 3500 Angels.  It can be found at 

We would appreciate help getting media involved in order to raise more awareness to speed up this process.  Not only would this help Anaya - it would also broaden the knowledge base of the public about Krabbe Leukodystrophy and newborn screening.

Wednesday, November 2, 2011

Mermaids and Puppies.

It's the little moments that we cherish.  The moments where we can feel Anaya's joy.  Her happiness shines from her little body and it's easy to imagine her smiling.  When we took her swimming at the Dallas, Oregon therapy pool it was definately on of those moments.

The water was so warm, but not hot. It was 94 degrees F - almost body temperature.  We were able to stay in the pool with her for almost an hour - which is usually unheard of.  In cold water pools she gets chilly so fast.  That's why we got her the wetsuit last winter.
It actually fits her now.

She stretched her little body out straight and floated bouyantly on top of the water.  She floats so well you actually have to pull her down into the water!  A few times she moved her hands and splashed the water.  Often we heard her happy sighs and she seldom needed suctioning.

We helped her move her body in the water, swishing and swaying, bending and splashing.  It was a full body work out.

After swimming we dressed her and bundled her warmly for a visit to Rob and Dee Dee's house.  They had a son who passed from Krabbe.  They graciously had us over for a fantastic meal and we got to play with their beautiful children.

I particularly enjoyed my experience with their daughter Jazzy. (Short for Jassalyn)  She's four years old with beautiful red hair that falls past her shoulders.  Her eyes were striking green and blue with light rims around the iris.  She sat and stared into my eyes.  Her soul shone so brightly.  I returned her stare, smiling.  She started smiling too.  She crawled into my arms and we became fast friends.

We played tickle monster, we played flip-the-toddler, we played the "what's that" game and she showed me her room.  All night she was near me or touching me, sitting on my lap or leaning against me.  Her antics reminded me so much of Solara when she was a little girl, just turned four.  Her friendship made me happy.  I couldn't stop playing with her.  It was so much fun.  Brent had his hands full paying attention to the other three and both of us took turns watching over Anaya. She slept like a log after swimming.  She slept and slept.  She didn't wake up until the next day - in the afternoon!

Here is a picture of when we went for a walk at Keizer Rapids Park.  There was a big beautiful tree.  It was so large you couldn't wrap your arms around it.  In fact I think it would take four or five people to get around it.  It had mossy roots and reached super high into the sky.  We decided that Anaya needed to get out of her stroller and touch this magnificent tree!  So I lifted her up and helped her.  She touched the trunk of the tree and her eyes widened and lit up.  The texture is so different than anything she's touched before.  It was a beautiful fall day.  The sun shone and Anaya was cozy in her peekaboo beans sweater and her love blankie in the stroller.  We walked for about two hours - exploring the forest and the bank of the river.  We managed to find our way back to the van and loaded up.  We headed back to Anguard. Anguard remains our home base.  Parked in the lot of NorthWest RV we remain hopeful that soon we will continue our journey south.

Anaya was a golden retriever puppy for halloween.  We had a quiet halloween but it was still fun.

Yesterday we attended the All Saints Mass with Honorary Great Great Grandpa Floyd.  It still amazes me that a 91 year old man is in such amazing health.  He walks and drives his car.  He can hear and is in complete possesion of his faculties.  He inspires me.  After mass we attended the Marion County Sherriffs Department where they presented Anaya with $400 towards her new mobile care unit.  We now have close to $20K.

 I have started a new facebook campaign called "Baby Anaya's 3500 Angels".  The idea is that if 3500 people (we have that many fans on The Anaya Initiative) were to each donate $10 then we would have enough to buy the new Mobile Care Unit outright and we could get going!! We are also looking into other options.  It is really getting cold here.  There is ice on the steps this morning.  The cold and damp is not good for Anaya.  She's already becoming more phlemmy.  We pray daily that she will maintain her health.  We also give her medicine, vitamins and supplements to support her well-being.  Recently we started a new supplement that we hope will boost her immunity and stimulate new cell growth.  It's main ingredient is Aloe Vera.  We are grateful to Marvin for his recommendation of this addition.

I'm going to go and kiss my little monkey now.  She's awake!  Have a great day.

Blessings to all of you.


Check out the 3500 Angels Page!

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