Any other parents of disabled children?
I've been looking for a place to vent, and this seems like as good a place as any.
My 5 year old daughter, Lily, has cerebral palsy. She was born 15 weeks premature, resulting in severe brain hemorrhage. Though she crawls very well, she can not stand or walk. She has very little use of her left arm and hand. She also suffers from seizures and has some pretty severe behavioral issues which include screaming, hitting, and self injury. Her speech is on the level of a 2 year old, but it is clear to everyone that she is very intelligent. Lily is basically a perpetual toddler. With my son, I survived toddlerhood because I knew he would grow out of it. With Lily, this has not been the case.
What frustrates me most is the total lack of support for parents of children in this situation. If I need a break from my 6 year old son, I can enroll him in camp or a sports program. This is simply not the case with Lily. Even finding a baby sitter who is qualified to care for her is nearly impossible.
I must admit, I never wanted children. I had kids because I thought it was what I was "expected" to do. Though I love my children dearly, sometimes I don't feel like I am equipped to handle Lily's needs. My husband is very supportive, and does what he can, but there is only so much he can do. I would love nothing more than to go out and get a job, but Lily's unpredictable health and frequent doctor's appointments make it impossible for me to commit to any sort of a schedule.
Ultimately, I feel like I have completely lost my identity for the sake of my daughter. My hopes of a career are over, I had to give up my sports car for a mini van to accommodate Lily's wheelchair, and I often have to skip vacations and other family events because Lily can not go.
Anyway, thanks for letting me vent. If anyone knows of and support programs or resources, I would love to hear of them.