Hi Pemberley,
Yes, this is a difficult business. It will get easier. Here are my thoughts.
You have been through a ton of suffering and hurt together with your child. That's been awful. It is not your job as a parent to remove your child from all suffering, though you will continue to do what you can to minimize it. As I see it, your job is to help your DD learn to experience herself as lovable and capable-- which includes capable of coping with whatever comes. Her recent success with self-advocacy tells me that you and she are on the right track with that. I am learning to trust more that with our help DS will find and use his capabilities to find his way in the world. Our job is to assist.
(Of course you will continue to mitigate her anxiety and other sufferings in any way you can; I do not mean to minimize those, only to say you need to be realistic about your role there.)
One of the things that has helped me surprisingly much is to read a bit of the writing of parents of disabled children who are differently disabled from mine. This has not only helped me learn to think about disability as a part of human experience (remember, MOST of us will be disabled at some point in our lifespan) but also helps me to see DS's assets as well as his liabilities in clear relief.
For perspective and good writing of this kind, I like this blog:
http://elizabethaquino.blogspot.com/Compared to many other disabled children, and many other children in the world, your DD is in good shape. She has tremendous intellectual gifts, and a parent who will lovingly and persistently move heaven and earth to educate her appropriately. She won't die of malaria or malnutrition, either. It is only if we indulge in perfectionist thinking that her disabilities are crises. It is likely that her road will be less straightforward than some, but she is an extraordinary kid, and I suspect that her road will also be ultimately more interesting than many. If you help her know herself and her capabilities, I think she will be far more than okay-- I think she will find a way to fly.
As a matter of policy, our family treats disability as a challenge-- it's nobody's fault, it's the hand you're dealt, but we are great problem-solvers and we will work with that. I realized how ingrained this was in our family culture when I recently became disabled; it hasn't always been pretty here, but this attitude can get a person through a lot of things.
I also try to make sure I am managing my own anxiety well through a variety of kinds of self-care. This will be very important for you. You are going to be navigating for a long time. You need to make sure your physical, emotional, and spiritual needs are being met. You need to make sure you sometimes have fun. This is not trivial, but necessary.
That's all I've got for now. I'm sure there's more...
Hang in there. It is going to be so much better.
DeeDee
