I used to consider myself a positive person. Life was a good thing punctuated by the occasional unpleasant experience, such as going to work or paying taxes.
Our daughter's condition hangs over us like a cloud. Life now seems like a darkness punctuated by the occasional time I can forget that this has happened. The one bright spot that always makes me happy is our other daughter, Katherine. I have long wanted to be a parent, but not until I became one did I truly understand the love one can have for a child. I would do anything to protect them. That is what makes Jocelyn so hard, as there is little we can do.
Her life expectancy is based primarily on three factors: Whether or not she has seizures, how mobile she is, and how able she is to feed herself. Seizures usually turn up in the 4 to 6 months. No sign of them yet and they passed the 4 month mark 2 weeks ago. There are things we can do to improve her mobility, such as working with a physical therapists and we can continue to try to feed her as much as possible.
Her life expectancy is 15-20 years, depending on the three factors. Her chance of seizures are about 80%. It is likely she will, at best, be confined to a wheelchair and we have had little success bottle feeding her.
We intend to keep trying, but the chances of improvement are slim.
2 comments:
Hang in there.
I say that not having any experience of what you're going through, yet holding faith in humanity's capacity to endure what must be amongst the very most trying, devastating circumstances.
You are in my thoughts. Please stay strong - for your young ones and for all of us.
Know that you and your family are in my thoughts and prayers. May your love of your daughter sustain you through this difficult time.
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