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Writings on Motherhood, Judaism, and Happily-Ever-Afters

December 2018Monthly Archives

Adventures in Legal Blindness

Nobody wants to hear that her child is legally blind.

Which is part of my problem, I don’t like the fact that he’s visually impaired.  I haven’t come to terms with the reality of it.  I still think, on some level that I know damn well is completely irrational, that if he isn’t labeled as legally blind – he isn’t blind.

Sam was classified as legally blind after the accident.  After the first year, his vision had improved to the point where he wasn’t legally blind, but still significantly visually impaired.  Because we are homeschooling, it was easy to kind of gloss over the reality.  I didn’t have to face that he couldn’t survive in a regular classroom, because I read everything to him.  I didn’t have to deal with the reality that he couldn’t see well enough to write anything – because I’d just do the writing for him.

Then we started the IEP process.  The TVI discovered pockets of blindness in his central vision, which changes things.  On a bunch of different levels, because it raises the idea that he might have cortical visual impairment, which may or may not be something that we can work with – meaning it might be possible for his vision to improve.  Or not.  Nobody seems to know the answer, and it’s not clear to me that it’s worth figuring out.  His score on the CVI scale is the highest you can get while still registering, and I don’t know that it’s worth putting him thru the amount of testing he’d have to do.

But either way – it looks like he does need to be classified as legally blind.

Only it turns out that he was never, in fact, removed from the registry.  So he’s been legally blind all along.  Or as my grandfather used to say (for reasons I can’t fathom now) – he’s blind in one eye and can’t see out of the other.  Which used to be funny – until it was suddenly a perfect description of my son.

There’s nothing about this I like.  Nothing is good about having to explain to my son that he is legally blind, and he won’t be able to get a drivers license.  His doctor and therapist both recommended that we keep it loose, flexible.  Explain that a lot can happen in the next few years – medical advances, his brain can find work arounds – it’s possible that he might be able to drive.  Maybe.  There’s self driving cars too – and lots of kids don’t bother getting a license at all, they just uber everywhere.

But every last little bit of this sucks, and I hate it.

My son is the bravest, sweetest, kindest kid in the world, and he somehow manages to accept the unthinkable, to adjust to the disability and make it okay, and it breaks my heart and makes me unbelievably proud at the same time.

The time has come

I can no longer shop at Children’s Place.  Or Gymboree.  Or even the little kid section at Target.

Julie’s built differently from her older sister.  Jessie was shorter, she fit in her age clothes from the time she was tiny.  When she was four months old, she fit into 3-6 months.  When she was seven years old, she was in size 6-8 clothes.

My Julianna Ruth is stunningly beautiful, and taller than almost every kid in her class.  She’s easily a full head and a half taller than her two best friends.  She’s got the same shoulders as her two oldest sisters, built taller and bigger.  She’s not overweight, she’s just bigger.  And she’s out of clothes.

Each morning this week has been a struggle to get her dressed, and at first, I blamed myself.  Clearly, I had fallen behind in laundry, maybe there were clothes that under her bed.  There must be clothes, somewhere, right?

There aren’t.  She’s just outgrown everything.

So – off the mall I went.  There are few places I dislike more than the mall, and the mall two weeks before Christmas is even less fun, but off I went.  Only to discover that suddenly, after fifteen years of parenting – I could no longer shop at my favorite stores.  Not that I shopped there very often, I’m the queen of hand me downs, and more often than not, I’m at Target or Walmart for clothes.  But I had always felt like I COULD go to Children’s Place or Gymboree, and I’m unbelievably sad that this time in my life is over.

I think both my girls are gorgeous and I wouldn’t change either one of them.  But if I could have switched their growth pattern, I feel like I would have adjusted better.  Julie’s only eight years old – it seems incredibly unfair that I’ve been shoved into the junior section when she’s still so young.

I was going to write that I miss having little kids – but the reality is that I DO still have a little one.  Eight is not the same as thirteen or fourteen – which is how old her sister was when I started shopping in the junior section for her.   It’s hard to find age-appropriate clothes for a little girl who still likes to rock a unicorn t-shirt.

Tiny secrets

We were at the sukkah celebration earlier tonight.  With three kids of varying ages, I’ve been going to the religious school sukkah celebration for fifteen years now.  But AP Stats homework got in the way for one kid, and another one fell asleep before I left, so it was just me and my youngest tonight.

Everything with my youngest these days is tinged with wistfulness, it seems.  She’s my last one.  And she’s not a baby anymore, at eight, she’s more than capable of getting her own drink and serving herself.  She even built her own sukkah herself, with graham crackers and frosting.

On the way home, she

(Edited to add that I had started to write this back in September, and something happened and I got distracted, and now whatever I was going to write is lost forever.  I was just doing this introspective little dance with myself, wondering if blogging was something that I still wanted to do – in light of the fact that all of the kids are getting older and I’ve been doing it for more than ten years now, I think.  Then I found this barely started entry, and am now wistful and sad because I don’t know what I was going to write, or what I was going to say.  It probably had something to do with having alone time with my baby, who’s not a baby anymore.  Or maybe it had to do with a discovery about Julie’s inner life, the stuff that goes on in her head when we’re not paying attention.  But it’s lost now, and it’s because I failed to blog it.  So that answers the internal debate of whether or not blogging is still something I should be doing. Sometimes you find the answers you were looking for in the strangest of ways.)