For Mother's Day, here's note I wrote a new mom of a child with a disability.
Hi Mama. Sooooo, it’s awful. It's wonderful. It doesn't matter at all. It totally matters and changes everything. It's exhilarating and you can do this. It's exhausting and some days you just can't.
It's about her and carving the best path for her to thrive. It's about you — what you can do and letting what you can't do be ok.
Don't be fooled by the urgency of disability — you are in charge, not it. She is more important than it. You'll know when there is a true emergency. Living with disability feels like an emergency all day long. It's not. No need to panic.
I live on autism time — x4 as long and x4 the effort. Figure out what your disability time is and make sure your expectations for yourself and her are at that timetable so you don't go insane.
Remember you are a family so what's good for you, your other child, and your husband are also what’s good for this child. This disability does not trump all needs at all times.
Release the need to cure. You have your own disabilities that you know how to manage, I have mine, Henry has his. I had to give up making every minute about curing him. And curing me. It's an imperfect life. Perfect is per some standard that has nothing to do with us.
And we'd rather be awesome than perfect.
Love you & your beautiful girls. Let me know how I can help you.