I hate being sick
Over the past two days I have developed some kind of lung infection with a sore throat. Julie has a cough that keeps her up coughing at night. I need to feel better tomorrow. NEED TO.
We had a good Sunday, our only family day together ever week. Each kiddo took a bath and while Rachel (who was the last to go) had a good soak we talked a bit about her eyes. You’ll have to remember that she has made very few comments about the loss of her eyesight in these last months which was another symptom of something “major”going on with her.
She was about 20/40 at the beginning of this year, tested at 20/125 and 20/320 in May 2009, then tested at 20/400 (with lighthouse cards) in early June 2009, then 20/250 in July (but was inconsistent with her answers, as she had been at the other two eye places). Her “certificate of Blindness” is signed 7/13/09.
Her eyes have progressed welllllllllllll passed 20/200 in these last couple of months with substantial loss of peripheral vision. You can literally tell by looking at her eyes that they are substantially more affected than they were in early October.
Still can’t get over it. She was born and was normal! (There aren’t enough exclamation points to emphasize that point, in my opinion).
I had to remind her that glasses can’t fix her eyes and that there is nothing that we can do to make it better. I’ve talked about this with her a couple of times before. This time her reply was “You mean I’m gonna be a blind kid?” I said that yes, she is (trying not to let her hear me cry). She then became concerned that she was going to be alone. I reassured her that she won’t be alone and she became concerned that I am going to die, that Daddy will die and that Granny will die.
Then she asks me: “What if you and Daddy and Granny and Julie, London and Boston all die?”
I then went through all of the people that will help take care of her and she kind of mentally walked away from the topic to play in the bath water.
Tomorrow is another school / work week. Hopefully it will be a bit brighter.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Love, I have No words. But you are often in my thoughts.
Damn it. This is so horribly unfair, I’m so sorry for Rachel and for you, and the rest of your family. I hate that she’s going blind, I hate that she knows it, I hate that you are going through this too.
Girls are having fun. Get better quick!!!!!
I hope you’re feeling better soon, Kat. I want you to know I’m thinking of you. (((hug))). This is all just so unfair.