Last week we went to a very informative seminar taught by a thoroughly knowledgeable and irritating man. He provided us with troves of contacts, resources, phone numbers, agencies, etc that can all provide support, people, or money of some sort for your disabled child. Unfortunately, his style of delivery was two parts Rodney Dangerfield and one part Mr. Seidenstein, my 10th grade history teacher. It's very surreal to watch someone trying to be entertaining while telling you about the American's with Disabilities Act. I don't recall ever before hearing a joke where the punchline was " ...he died when he was 6 years old!"
He also kept telling us how important it was to stay hopeful, that hope was more important than doctors or therapists or anything else. He kept telling inspiring stories of kids whose parents were told that they would be vegetables all their lives but who managed to learn how to eat and talk, etc. I can appreciate how amazing these successes are, but the problem I have with hope is it's contingent on success and change, which are not things you have in the present. Hope is an illusion, a possible future, but it doesn't do anything in regards to now.
Truthfully, it is very hard to enjoy Lula as she is now. She can't really express happiness, she can only express when she doesn't like something, and she doesn't like a lot. She hates cars, carseats, sitting in a chair, lying flat on her back, being changed, being bathed, the wind, the list goes on.
She is learning to like some things, however; she now likes to lie on her stomach, she likes squash and oatmeal in very small quantities, and she likes being held. All the time. But like is expressed mainly as not fussing. She doesn't smile or coo or laugh.
So my Mother's Day wish for myself is this: Of course, I will hope that my child gets better, that she learns to hold up her head and crawl and smile and laugh and play. I can even ambitiously hope that she outgrows all of this, although that's extremely unlikely. More than all that, though, I hope for myself that I can find happiness and love in being Lula's mom as she is, for who she is, if none of my other hopes come true.
Aw Mikaela, you made me cry! I just want to give the both of you big hugs. And I really hear you about hope. I remember reading in a Pema Chodron (I think?) book about hope. She said that the best thing was not to hope, so that you could accept the present, and in that acceptance, find happiness. That's easy to say or write when its not about your child, but I think its pretty much what you are saying too. Anyway, much love and happy mother's day ~
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