Jan 1, 2011

Happy New Year!

I've been thinking about the past year today. I remember a year ago Anaya was well still. It was in January that she became extremely irritable and February when she started choking at the breast. We were in the children's hospital for the first two weeks of February. We drove home on Valentines day. We thought we were taking our daughter home to die - because that's what we were told to expect.

Quickly she lost her smile, the movement of her body, her cooing, her sight. How I miss those eyes - her soul looking into mine. We tried everything and stopped at nothing to help her. Perhaps that is why she is still alive today - perhaps not. We cannot know what mysterious goings-on happen in her little body. We can only note the changes we see and feel.


There is so much dynamic in our household. Solara is an energetic 8 year old vying for time and attention, but never has displayed insane amounts of jelousy over the attention Anaya gets. Brent is quiet and maintains some kind of inner calmness I could never duplicate - except for when he becomes impatient. Our dog Buddha is timid and hides away much of the day on his special chair. Anaya is like the hub of our existance. Every move we all make depends on her and how she is doing that day. We all love her to bits and cannot imagine our lives without her...and there are our nurses too, carrying on quietly around the household, reading to Anaya, feeding her, giving her the medicines and vitamins that help her. The day to day here is a routine that feels somehow in between worlds. The world before Anaya and the world After Anaya. How can I imagine our home without her?

At night I lay beside her, her crib snuggled up next to my bed. She sleeps on a specially made mattress that angles upwards to prevent her from throwing up (refluxing) in her sleep. She sleeps on her stomach so that the saliva flows from her mouth onto a clean cloth so that she doesn't have to choke on it in her sleep. Sometimes nights are worst for me and Anaya. She breathes in and out in loud bubbley rasps when she's got a cold, as she has now. It puts me on edge and makes it difficult to fall asleep. I wonder to myself "What kind of life is this to be so comprimised? How awful must it be to struggle to breathe waking and sleeping. Would death be a welcome release from this imprisionment of her soul?" I cannot guess nor know. It is not my life it is hers. I am simply here to love her and keep her comfortable as possible on her journey. God how I wish I could cure her. How I miss her smile and her laugh.

One day, in the place beyond death, I shall see her smile again and we will dance and play together in the sunshine. She will laugh and run with her sister and sit on her daddy's shoulders. In the place where there is no time. Until then my love wraps around my wounded angel and I feel her love for me in my heart. We will continue on together - no matter what the struggle.

Anaya seems limited in her perception of the world. I know for sure that she is aware of her breathing, and of the voices of our family. She enjoys music and being read to. In times when I question her intelligence I am reminded of Helen Keller, who was blind, deaf and mute. She turned out to be able to communicate and function - so why can't Anaya? Although I don't think Helen Keller had a demyelinating condition of the brain.

We hope the new year will bring good things for humanity, for our family and for Anaya. We are eternally grateful to all of you who have helped us by reading, commenting, contributing time and money and for being there for us in your hearts.


A million thanks to Courtney and friends for buying Anaya this magnificent generator to keep her safe when the power goes out!