It takes so little for me to go back there, to that place of being so scared for Sam and feeling powerless to make it better.

We’ve been homeschooling for three years now.  Or it’s been three years since the accident (because that first year is just a blur of doctor’s visits and white rice).  I’ve built a curriculum that works for him, super heavy on reading and history and science, we’re finished with elementary math and moving on to intermediate.

But there are still this areas where I’m lost and in over my head.  I decided to pursue getting him evaluated to see if there were any learning disabilities that he’s dealing with on top of the low vision.  Is he dyslexic?  Dysgraphic?  Or is it that he stopped being able to see easily in the beginning of third grade, and then missed another year before we started working on actually writing things down?

But, oh-my-God, it’s hard.  Even the thought of putting him thru testing makes me teary eyed and vulnerable.  It’s all tied up together, evaluations and eye tests, holding him down for anesthesia as he begs me to take him home.  Arguing with doctors and nurses, trying to find coffee on darkened halls just to stay awake, because it’s been 36 hours since I’ve slept and I need to be alert for my boy.  All of it is right there, and it’s terrifying in ways that I’ll never, ever be able to forget.

I can push it down.  Process it, feel it, and then move on.  It doesn’t impact my life all that much anymore.  Getting shots is hard, I still get a lump in my throat whenever he complains of a headache (which is blessedly rare).  But this whole idea of getting him evaluated is terrifying to me, and I’m torn between forgetting that I ever thought it was a good idea and pushing on, advocating for more and more testing so that we know exactly what he needs to get the education he deserves.

Homeschooling is easy, after all.  I love it, I love teaching him things, seeing how his mind works and marveling at the things he can do.  But reassuring myself that I’m doing all the right things, that I’m not missing steps that we should be taking, knowing that there’s no guarantee, nobody making these decisions but me is both exhilarating and horrifying at the same time.  I don’t want anyone forcing Sam, I truly believe that I know him better and how to best work within the limits of the disability and the anxiety, and the thought of trying to cram his little square mind into a round hole… it’s terrifying.  Because the last time I tried, it led somewhere I’d rather never ever go again.

Third Nor’easter in twelve days, and I’ve grown to love these mid-week snow days.  I now think it’s utterly normal to go to public school for a day or two, take a few days off, and finish up the week.  I usually try to homeschool on snow days, but with Marc home today, I let it be a reading day (or an audiobook day) and chilled out with the kids all day.

It’s been a quiet day.  Jessie is suffering from a variety of maladies, including transient appendicitis, a headache, and (at times) her arms hurt, her legs hurt, and sometimes she’s just crabby.  She did walk the dog once for me, though, so she’s currently my favorite child.  Julie has been in jammies all day, and has been coloring or playing with the dog.  Sam usually walks the dog a few times for me, but with a blizzard – I just didn’t feel comfortable sending him out there.  He can’t see that well, and there was so much snow everywhere.  So it’s been me and Lizzie Beth outside.   Nobody loves snow quite as much as that dog does, and she bounces everywhere, all over the place, and comes in covered in snow and delighted with herself.

We achieved a massive and major homeschooling milestone the other day – Sam actually attended a homeschool event.  He’s bailed every time I’ve tried it, insisting that he doesn’t feel good, or needs to sleep more, or just doesn’t want to go.  But he needs homeschooling peers, and so do I.  When one of the (millions) of homeschool groups I belong to started thinking about getting a get together, perhaps a gaming get together, in the library the next town over, I signed up.  Ever hopeful, because I sign up for stuff all the time, hoping that he’ll go.  I sold it this time as a favor to me, I needed new friends, and he went along with it.  I think it was so important for him to see other homeschooling kids – I worry he might feel like he’s the only kid in the world who homeschools – because for him, he is. I know there’s a big world out there, and lots of families homeschool, but he’s not seeing that.  It was so good for him to see other kids who aren’t in school during the day.  Hoping that this will continue, and possibly I can get him involved with other activities as well.

There’s so much snow outside, I can’t see out the window.   It’s been blowing all day, and the screen is totally snowed over.

There are internal clocks that go off for me, when I find myself in a certain emotional place for no specific reason, until I look at a calendar and realize what’s happening.  For example, every February, April and July, I usually find myself going thru a week or two of massive baby-fever, where I really do regret not having more kids.  And it always takes me by surprise, because I never connect it to the kids’ birthdays until a week or two after the fact.  And as it turns out – I also apparently feel the need to start questioning everything spiritually around the time when my kids are 11-13.

We know we aren’t going to have a traditional bar mitzvah for Sam.  Even before the vision issues, even without the anxiety that would make a performance like Jessie’s incredibly challenging – this kid has some serious and significant issues with organized religion, with belief in God in general, and participation within in a religious community in specific.

But he’s still going to 13 before too long, and I find myself very aware of that.  Very aware that he’s going to responsible for himself, in an official sort of way, and that I need to prepare for that.  Even if I’m not following the same path I did with Jessie, with the meetings with the cantor and the reminding her to practice, and throwing myself into more involvement in the synagogue so that I’d set a good example for her – it’s still part of the process, of having an 11 year old son, of getting ready for him to be a man.

There’s something I cherish about the bat/bar mitzvah process, the idea that we take these kids, at the cusp of their adult life, and have this formal process of welcoming them to the club.  Of saying “you have a voice, and we’re going to listen to it.  You are a welcome part of this community, and a responsibility to stand up and be a part of it.”  Even though he’s not a particularly active member of the Jewish community, he is a part of MY community and he’s going to be adult.  I’m feeling this sense of urgency, like I need to hurry up and prepare him for… what?  Being fourteen?

Because the reality is, with Sam, he already has a voice.  I have changed the way I parent him, the way he relates with the world because he’s already been thru hell.  We listen to his voice.  I don’t force him to do anything – because I’ve already had to force him to do incredibly painful and scary things, and I’ll only do that now when it’s a life or death matter.  And I’ve learned that Sam, fundamentally, is able to do the hard things, and make the hard choices, when I step back and give him space to do so.

On a lot of levels, I already had to face everything about having him grow up because he’s matured in ways that the average 11 year old hasn’t.  He’s faced incredible pain, and the loss of everything he loved, and come thru the other side.

With Jessie, her bat mitzvah was this huge public thing.  We had hundreds of people at the service that day, and it was overwhelming for everyone.  It was a very public and emotional day.  She was beautiful and eloquent and amazing.  And everyone could see that.  People I didn’t even know were there, and they celebrated right along with us.

With Sam, I don’t know that we’ll do much of anything at the synagogue.  We might, but it might be a Thursday  morning, with just us.  His won’t be public and he won’t be eloquent.  I’ll be lucky if he’s standing up at the bima with us.  But it’s that same feeling of…. overwhelming love and pride and wistfulness, wishing I could get the time back, wishing that it would slow down.  Being so grateful for this child, in this place, at this time.

There’s something magical about this time in a parent’s life, when your child is not a child anymore.