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!



  1. Anaya is just beautiful! I read about your story in the Salem newspaper a couple days ago online. We live in Troutdale OR not too far from Portland (about 1 1/2 hrs from Salem). I am so glad that some Oregonians are showing your family love. I have put your button on my blog. I also *liked* your FB page. We are praying for your family and for the fundraising efforts for MCU so you can head south and continue to spread the word. God Bless you and your beautiful family.

  2. I have sent a message to Ellen.....SOoooooo hopeful she will engage her incredible energy into helping you guys out !!! I will keep you in my prayers :)

  3. I have sent a message to Ellen....Hoping she will embrace you guys with her incredible energy and help you continue on your incredible journey as a Family!!!!! I will keep you all in my prayers, including Solara :)


Please feel free to comment and send your LOVE!