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."