January 26
It has been 1 year!
1 year ago today our sweet, beautiful, precious baby girl was slammed with viral encephalitis and she suffered global brain damage.
1 year ago today her life was changed forever.
1 year ago today our whole family had to re-define the word 'normal'.
The doctors said,"We don't know what will happen to Suzy. Let's just get to the 1 year mark and see where we are. The brain takes a long time to heal. Her progress over the year will give us a clear picture of what her life will be like."
Here we are - 1 year! She is 23 months old, and has the skill levels of a 4 month old.
-she still can't maintain head control
-she can't sit up
-she has no balance
-she can't roll over
-she can't bend her elbows
-she can't hold anything
-she makes no purposeful reaching and grabbing movements
-she can't maintain eye contact
-she is not always part of 'our world' - there are times when she still drifts 'off into space'
-she can't sleep for more than 4 hours at a time
-she can't change positions in her crib
-she won't sit in a car seat of stroller without screaming and posturing
So....what does this say about her future???? In another year will she progress another 4 months and have the skill levels of an 8 month old? And if she does, should we be grateful?.....................
I know......I know.......focus on the positive.
But, I am so tired of being sad, helpless, hopeless, exhausted and full of gloom.
By the way - our family is supposed to leave tomorrow for our trip to the Dominican. Surprise-surprise - we had to cancel the trip. Suzy is too sick to travel. My other children are so dissappointed. They were really looking forward to some time away.
I'm not looking for pity. I just wanted to document the day.
Peace,
Whitney