Melissa Anne Cohen

There are days when the world wants too much from me.  When motherhood demands more than I have to give, and all I can do it toddle along, hoping I’m not dropping too many things.

Jessie is sixteen, in the throes of college prep and agonies over sophomore year.  Too many classes, too much homework, too many commitments and too much angst.  I know that she needs perspective, I know that she needs to step back, recognize her choices and the consequences, and be okay with those decisions, but part of her likes the stress – and so she continues to put herself in this place, because the stress is part of the process for her.  She can’t see it, and the stress is real and huge and overwhelming and all I can do is try and say the right thing and hope that she doesn’t melt down entirely.

Sam, oh my Sammy.  The IEP process is brutal, unbelievably draining and exhausting and the worst reality that I’m facing is that in order to get what I need for him, I need to relive the worst moments of my life, of his life, over and over again.  Because when I get vulnerable, when I break down and sob, when I force them to see this child in front of them and what he’s been thru and why I need what I need for him – that’s when I get results.   But it’s awful and horrible and draining and I’m worn out.  And all of that is happening before I tackle on dealing with a kid who’s struggling to learn a completely new way of reading and writing.

Julie, my Julie.  She’s the only one who hasn’t demanded too much of me today – and of course, all that means is that I’m feeling guilty because she hasn’t had enough of me.  Did I pay enough attention, did I make her feel left out and lost?

I’m worn out today.  It’s all been way too much, too much emotion, not enough time or energy or answers.  Too much laundry, too many dishes, too much of not being able to get it all done.

Tomorrow will be better.  I hope.

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.

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.

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.)

I mean, I really hate cooking.  Given the choice, I’d either eat out every night, and have PB&J or tuna fish if I was in the mood to stay home.

But with three kids, and a budget, plus a weird desire for them to have a somewhat healthy diet, cook I must.  And again, I hate cooking.  Like most things I hate doing, I do it badly.  I burn things often, forget to season or put in so much salt it’s inedible.  There are a few meals I can credibly make, and I repeat them, on an endless loop.  Every now and again, I toss in something new that Marc chokes down because he loves me, but mostly, food in this household is sub-par, at best.

But the one thing I could do was bake.  I bake challah and chocolate chip cookies and apple cake.  Cupcakes and brownies and snickerdoodles.  I LOVED baking.  It requires absolute focus for a few minutes, while you’re actually assembling it, and then you can set a timer so I don’t forget it when I wander away.

When Jessie was diagnosed with celiac disease, all of my baking came to a screeching halt.  Flour flying around the kitchen is like poison in the air for Jessie, and then even if she isn’t home, I can’t have baked goods around the house that she can’t eat.

Gluten free baking is HARD.  There’s xanthem gum, to begin with – which is so confusing, I can’t even spell it..   Almond flour, rice flour, it’s all baffling to me.  And the amounts are scary too – ingredient lists that are longer than the instructions for baking, and it all just seems too complicated to contemplate.

BUT – it’s Yom Kippur tomorrow.  Or tonight, actually, but we’re having a big Open House sort of Break the Fast, because everyone we know breaks the fast at different times, so we’re just going to have a ton of food out all afternoon into the night and see who shows up.

My go-to High Holidays dessert is apple cake.  I make THE BEST apple cake.  I mean it.  It’s fantastic.  And filled with gluten.  I tried a gluten free version for Rosh Hashana and ended up so disappointed I couldn’t eat it.  It was… bad.  And Jessie loves noodle kugel covered in gluten covered frosted flakes and apple cider donuts from the farm stand.

I’ve been baking for the past three hours (after cleaning all day, and then taking a brief break to attend the PTG meeting), and have finally achieved a baked good my baby will eat.  I make kugel with gluten free noodles and then crushed cinnamon chex on top.

When she told me my little donut holes tasted just like the ones from Tougas, I literally had to blink back tears.

I still can’t cook – but it’s possible that I can still bake.

I dropped off Sam’s IEP paperwork today.

I’ve been planning to do it for a month or so now.  I was just afraid.

I don’t ever want to repeat what happened to him.  Which is, of course, an understatement and too obvious to actually be what I’m saying.  But the two to three months prior to Sam’s accident was hellishly hard in ways that got lost after how bad the accident was – at least to everyone else.  For me, the accident was just a nightmarish continuation of a situation that had gone downhill so fast and so far.

I don’t know if I want him back in public school.  But I do know that what I want isn’t as important as what he wants.  And if he thinks that going to school is what he wants and needs, then I need to do whatever I can to make sure that it’s possible.  And not only possible, but I want to set it up so that he can succeed, to structure it in such a way that he can do what he needs.

No decision is permanent, and I can pull him out if necessary.  Not even if necessary, if he decides that he can’t do it, or doesn’t want to do it.  Homeschooling is going well – not fantastic, but well enough that I can see doing this up through high school.

Part of what happened, with the accident, is that in a real way, everything changed for Sam.  We were so lucky that it was just a psuedo tumor, just a big scar and vision loss.  It changed everything.  All of those expectations and hopes that you have when your child is healthy and neuro-typical – those seemed…. beyond what we could think about for a while.  Rebuilding that is both incredibly empowering and terrifying.

This is a hard time.  Nowhere near as much as when he was in and out of the mental health clinic, and not even close to when he was in so much pain and terrified.  But it’s still not easy.  I’m afraid of the future.  I’m optimistic about it too – because he has come so far, and is doing so well – but there’s a lot of damage and baggage from the past few years.  I’m not as resilient as I was before, I know how bad it can be.  It’s a lot harder when you don’t know what it’s like to have a child lost in anxiety and fear and rage and terror.   When you haven’t sat in the PICU, with doctors coming in and out of the room, all offering a different treatment plan…

This is where we are.  And I’m so grateful for it.  Just hoping that the gratitude and optimism wins out over the fear and anxiety.

It was a weird sort of summer for us.

Jessie had a ton of homework, and several scheduling snafus that led to her doing an enormous amount of work for a class she won’t take until next year.  Sam announced happily that he’s ready to think about going back to school, and Julie spent an absurd amount of time watching the Harry Potter movies and far too many Kids Baking Championship shows.

We did hit the beach a few times, several day trips into Boston or up to a lake for a while.  I had big plans that we’d do so much – and we really did next to nothing.

The girls fought almost all the time.  Sam slept far too much.

But on the upside, it did mean that we’re very excited for the start of the school year.  Jessica is starting her sophomore year (three years left – insert dramatic sob here), adn Julie is in the third grade, and so far, loves her teacher.  Sam is finishing up Level 5 in Build Your Library, and hope to finish Level 6 this year.  We’ll finish the intermediary levels in Life of Fred for math and start the decimals and fractions books this year.

I’m feeling… content.  Things are going really well with Marc’s job, and I’m so grateful for that.  He’s happy and fulfilled, and the hours are so much better than anything he’s had before.  He does have to work at home a lot at night, which sucks, but he’s HERE and that’s enormous.  Both girls are thriving – they both wanted to go to public school (because I lobbied for homeschooling for both), but they’ve got friends and like the routine.   And so far… it works for them.  Sam is doing fantastically well at homeschooling this year.  So much more amenable and open to learning, to structure and trying new things.  Which makes it both harder and easier.  Easier because it’s just so much easier, but harder because I know he wants to go back to public school eventually, and I’m dreading it.

It was so hellishly hard before we pulled him out of school.  His anxiety was thru the roof, and now we’ve got a TBI and low vison to add onto the burden.  It’s been three years.  Well, two and a half, and we were just now at the point of starting to maybe think about starting a little math two years ago.  I want him to succeed.  I want him to know that when he works hard and does his best, it gets him the results he needs.  I don’t want him to slam into his disability.

I want him to not have a disability.  But if wanting made it so – the past three years would have been very different.

I don’t believe he’s going to be twelve years old.

When I look back over the past twelve years, I find myself thinking about how I’m never quite sure what I’m doing with Sam.  He was my first natural birth, because Jessie was a c-section, and I had no idea how to push.  Everyone kept telling me to push, and I was confused and bewildered, and I swear to God, he just pushed his way out on his own.  He knew what he needed, what he wanted, and he made it happen.

Same thing with nursing.  I had nursed Jessie, but that was a completely different experience.  Sam was a voracious nurser, and nursed for comfort as much or more as he did for nutrition.  I was baffled by it – I had taken detailed notes on how long and which side with Jessie for weeks – but with Sam, he nursed so consistently, so often, I gave up tracking it on the second or third day.   Again, he knew what he needed, and he made it happen.

I didn’t initially get that Sam had an anxiety disorder.  I thought it was normal separation anxiety, maybe a little more pronounced because he was a boy.  He wasn’t anxious when he was with me.  Sam knew what he needed to feel safe, and he fought like hell to make sure he got it.

When we made the decision to pull him out of public school, I was terrified.  I had no idea how to homeschool but I knew trying to force him into a public school setting was harming him.  When he was in the accident – suffice it to say that terror was the least of what I was feeling.  It was the very worst time in my life, and even now, writing about it is enough to bring me to tears.

But I will say that Sam knew, all the time, exactly what he needed.  We just needed to learn to listen to him.

I’ve learned to trust him, to give him space to come to the decision on his own, whatever it is.  To give him the safety and security to grow and learn and struggle and dream, and I know that whatever Sam ends up doing in his life, he’s going to do it better than anyone could have imagined.  Because this kid is the strongest person I’ve ever met, with a better sense of what he needs and how to make it work, and I am constantly in awe of his ability to handle impossible things, to find a way to make it okay, and to quietly work to achieve his goals.

Happy birthday Sammy – my buddy, my guy, my killer of bugs, and lover of dogs.  You are amazing and inspiring, and when you sing ‘It’s Raining Tacos”, it’s the best thing I’ve ever heard.

We don’t handle the heat well.

I mean, we try.  But my family is not one that enjoys weather extremes.  We are made for the in-between seasons, balmy spring days, when the leaves are just poking out and the air finally feels warm after months of icy hell.  Pumpkins and cranberries, when the foliage is changing and we can crunch thru the leaves when we walk the dog.  This is just ridiculously hot, all the live long day and the nights are worse.  Everything is so STICKY.

We’re six days into a seven day heat wave, and counting the minutes until Friday.  Raging thunderstorms seems like a perfect way to celebrate Sammy’s twelfth birthday, and I can’t wait.  For the drop in humidity – I’m wistful and slightly intimidated by the prospect of my baby boy turning twelve years old.

Jessie is drowning in summer reading, as per usual.  It’s tough to tell how much of it is self-imposed, because she really does seem to exist at this hyper level of stress, but as she says, she likes it that way.  And she’s self-aware enough to know that it’s a choice she makes, she’s choosing to be in an academically advanced program, and to take a bazillion AP classes.  She could drop down to an honors level, or even choose to be homeschooled if it was too much (and I’d be fine with either of those choices), but she really does like going to school, and loves learning.  We’re moving ever closer to her thinking about college, and that scares me more than the idea of Sam being one year away from teenhood.

Julianna is having a low-key, quiet summer.  Sam’s busy with homeschooling and sleeping (because he still does that like it’s his job), and Jessie’s constantly in the middle of one project or another.  Julie is drifting a little. I need to get on top of that, schedule her some playdates or get her doing more homeschooling activities.  She was adamant that she didn’t want to go to camp, and I didn’t want to pay money for something she didn’t actually want to do.  But I’m noticing a lot of general moodiness and she’s bored.  Which could be the heat – I’m pretty moody and bored too, because it’s too damn hot to want to go anywhere or do anything.