Heavy

I’ve been remiss in posting, I know. Things have been busy, and hard, and hard to write about. I am fully immersed in the world of special needs parenting, with all the very hard sadnesses and all the surprising sunbeams of grace.

We have had insults from strangers and not-strangers – someone at a restaurant actually gave Gracie a dirty look the other day, for no apparent reason other than her special needs. Thankfully, Gracie didn’t notice, but I did. Then, someone very close to me told me a not-too-subtle story about special needs kids. That one hurt my heart; it’s one thing to have someone you don’t even know shoot a snarl at an oblivious child, but it’s quite another to have someone who knows her well criticize one of the things she’s worked hardest on.

And then there’s school… She goes to an amazing school for special needs kids. She has thrived there – she learned to walk because of the attention they gave her. But last Friday, her school told me her medical needs are too great for them to accommodate. We would have to set up a meeting with her doctor in order to have her continue there. This is the school we have praised up and down, we have been grateful to for over a year, we called a godsend. Godsend – ha! The Lord giveth and the Lord taketh away, I guess.

We had the school meeting today. It was hellacious, and my heart is heavy. I hope to find out tomorrow what they decide; it did not go well today and I don’t expect them to allow her to return to school. What am I going to tell her? How can I tell her that the school she loves so much won’t take her back? It’s like being stabbed in the back, like having your best friend walk away with a sneer. How will she take this unnecessary slight?

One little sunbeam, though, was her doctor. She shone through for us. She said exactly the right things, she was calm and collected, and she truly was there for us. This little kindness makes me want to collapse in gratitude – the hand reaching out to grab someone who is drowning is truly a nicety indeed.

I wish Grace could just be accepted. I wish she didn’t have to deal with this too, on top of all the medical stuff. She is Amazing Gracie – I wish everyone would just look past the potential lawsuit and see her for the beautiful, sweet, smart, loving, good girl she is.

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