I just want to feel normal
Exhaustion...... being a parent of any child takes a lot of energy. Being a parent of a child with significant disabilities is simply exhausting. This leaves you with very little time or energy for yourself, your spouse, your other children and your friends.
Its difficult to keep positive; every so often you just break down and cry, not from a "oh why me?" perspective, but from a "how will I make it through the day, week month etc. ?"
Biggest source of grief: school systems and the poor quality of Special Ed programming, which forces us into an ongoing adversarial relationship with the school. You fight for weeks to get more help from the school and when you get it and then go into observe a session, you discover the person is just going through the motions, and really either has no skills, or has no interest in using them. You find a great teacher or therapist in the school system and they leave because of the poor pay and little support they receive.
Most of the time I am hanging on by my fingernails, racked by guilt that I am not doing enough either for my disabled son, or that all I do for him is time stolen from my other children. The idea of doing something for myself seldom bubbles up to the top of my thoughts..
Respite care is too infrequent, and quite honestly too much hassle to access.
There is no uncertainty regarding my sons future, he will be living with me for as long as I am around.
We try to socialize, and that helps. I don't feel isolated.
We survive, by celebrating the little victories, trying to stay together and not allow the hardships to create a wedge between us.
I don't want anyone's pity, I just want to feel normal.