Purim has never been one of my favorite holidays. I was first introduced to it as a new mom, with a tiny baby girl who was terrified of the rabbi dressed up like a gorilla. My subsequent kids were panicked by the megillah reading, with the shouts and noisemakers and then the inevitable arguing over who got which treat in the mishloach manot baskets – it’s always been the Jewish holiday I struggle to connect with.
But my kids have gotten older, and a lot of the hard parts of Purim have been outgrown. One of the more challenging parts for me has always been in figuring out what to wear, and the kids are old enough now to pick their own costumes. Then my son announced that he had decided to go as a blind kid instead of a policeman.
The irony is that he is visually impaired. Sam was in a bad accident a few years ago, and lost vision as a result of his injury. The vision loss was slow and gradual, and thus, accepting his disability has also been slow. I don’t think either of us was ready to admit that his vision was really that compromised. He’s right on the edge of legal blindness, with enough functional vision to make it not a foregone conclusion that he needed braille. Because we started home schooling right after the accident, I was able to tailor his education to meet his abilities, and the fact that he couldn’t see to read was easy enough to gloss over. But as he’s gotten older, he’s gotten more independent, and this year, we’re starting the process of reintegrating him into public school.
Putting aside entirely the challenges around designing an IEP, the biggest hurdle has to be acknowledging his disability. For a long time, I think we tried to pretend that it wasn’t there, or at least, that it wasn’t as bad as it could have been. A minor hurdle, a challenge, but hey, every kid has challenges, right?
When we looked at putting Sam into a regular classroom, the reality that he is blind came crashing down on us. In addition to all of the technology that he’ll need to access the curriculum, we also ordered him a cane to give a visual cue to those around him that he couldn’t see as well as you might expect. Because blindness really is an invisible (oh the irony) disability, one of the challenges is expectations of those around us.
Sam has been very slowly starting to use the cane out in public. He doesn’t technically NEED it, because he’s been existing like this for the past three years, but it does help, especially in a setting where the lighting is low. A Purim costume and dance party is a good example of where a cane would come in handy. And when he first said he wanted to go as a blind kid, I was initially taken aback. My knee jerk reaction is that he’s not a “blind kid.” And while yes, he’s visually impaired, he wanted to go, bring his cane, get some dark sunglasses and just go as that – a blind kid.
Once I wrapped my head around it, I said it was a great idea. Because it is. Sam is a “blind kid.” It’s his disability, his life, and this was a way to experiment with going out in public embracing that identity. I’m not going to pretend that it wasn’t hard. On some level, I don’t think I’ll ever stop grieving the loss of his sight, the loss of the ability to walk around without a cane. And when I saw him walking over to the refreshment table on his own, using the cane to knock the balloons that were on the floor out of his way, I asked my older daughter to keep an eye on him and went into the bathroom and cried.
Because the grief is real, and watching him grow and own his disability is incredibly complicated. I’m proud and devastated all at the same time. He’ll be thirteen this year, and his bat mitzvah is rapidly approaching. I’ve always loved the idea of acknowledging this time in a young adults life, recognizing the increasing responsibilities, not just on a religious but also on a community level. As a parent, it’s important for me to acknowledge that it’s no longer up to me to manage Sam’s vision loss. Dealing with his disability is something Sam will have to do for the rest of his life, and he’s doing a much better job of it than I am. For Sam, he’s coming of age not just chronologically, but also coming to accept his vision loss, to make the accommodations he needs, to ask for the help, and to know that he’ll find his way, even if he can’t see as well.
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