Melissa Anne Cohen

Parenting a kid with a disability is so much harder than I think it will be.  And in some ways, it’s easier than I anticipated.  I’m always aware of how lucky we are – that the accident only damaged his eyesight.   An inch higher and his face would have been so much more hurt.   I miss his chin, before the scar, but it’s still his face.  His sweet, sweet little face.  And inch lower and he would have broken his neck.  We could have been dealing with paralysis or worse.

I alternate between thinking I’m super good at this.  I’m in tune with my son, I catch his moods and can usually fix a panic attack within a few minutes.  I reassure him, and can make him feel safe.  I know I’m not magic, he’s made amazing progress from where he was mentally just before and after the accident.  But the reality is that Sam responds to me, all the time, and with my help, he’s usually able to get thru whatever he’s struggling to do.

I adapt what I’m asking – I find the curriculum that suits him best.  I know when to push and when to step back.

I’ve managed to get him a computer, a desktop CCTV, an ipad and a portable CCTV – all without the help of the school system or the MA Commission for the Blind (although to give them props – they did hook me up with contact info for the Memorial Fund, and they provided the ipad and portable CCTV).

But then I find a website, for the National Federation for the Blind, and their sister site – for parents of blind and visually impaired children, and kick myself because it’s been fifteen months since the accident and I’m just finding this now?  And I can only handle reading one or two articles before I have to stop because it’s just too much and I get too sad.  I’m not strong enough to do this – to fight for him, to figure out all of his needs and make it all happen, when the entire world seems stacked against him.  I’m all he’s got (and I know that’s not true, because I couldn’t do any of this without Marc – but in the moment, it all feels like it’s me), and I’m not good enough.  I don’t know enough, I miss things, I don’t push hard enough for what he needs because I don’t know.  I accommodate the anxiety, which means that I’m not doing enough for the visual impairment.

I spend most of my time – going between these two completely different feelings.  Sometimes I feel like I’ve got it all under control, and I know what I’m doing and he’s thriving.  And then I feel like I’m missing EVERYTHING he needs, and he’s going to end up with so much less than he should have, simply because I failed on a core level to do my job as his parent.  I’m supposed to protect him, to guide him and teach him, and encourage him.  But what he needs is so much more than just sending him off to school every morning with a healthy lunch, and making sure that he’s got warm clothes and doesn’t lose his mittens.  I have to figure out every aspect of his education, with the added complication of a disability that may not impact his ability to walk down the street, and he might even be able to drive a car someday – but he’ll never be able to grab a paperback and sit and read it.

No more website reading for tonight, I’m too sad.  Too fragile for tonight.  Because tonight, I’m just beating myself up that I haven’t taught him braille yet, or gotten him a white cane.  That I’m not pushing him to write essays or do standardized tests.  Tonight, it’s all I can think about – and reminding myself that he went thru hell over the past year, that taking the time to deschool and figure out homeschooling is okay, that’s he’s brilliant and motivated, and I shouldn’t be terrified by the statistic that 70% of people who are blind or visually impaired aren’t able to find a job.  Tonight, I just feel like crap, and I’m terrified for the future.

He’s my baby, my boy.  And he’s eleven years old today.

I find myself struggling for words.  The accident dominates everything, still.  I try to put it in some sort of perspective, and see it as part of the process.  It’s just one more detail in your life

Things will be harder for him in a lot of ways.  He can’t see as well as most people.  But in a lot of ways, he’s got advantages that a lot of other people don’t.  He’s incredibly bright, and sweet and kind.  He’s got us, all of us.  His dad, who works so hard to support him in every way possible.  He’s got me, and not to brag – but I’m doing my best, every day to advocate for him, to anticipate his needs, to push him to do his best and try harder.  He’s got four sisters, all of them love him and tease him and laugh with him, and want him to succeed.

At eleven, he’s halfway to adulthood.   I look back over the past eleven years, and I’m so grateful for all that Sam has brought into my life.  Sam taught me how to be an advocate, how to stand up for him and to trust his instincts.  The hardest lessons I’ve learned, as a mother, are how to trust the process, to take the long view instead of the immediate one.  Sam is one of the best people I’ve ever known.  He’s endlessly kind and thoughtful, and stronger than any eleven year old should be.

Happy birthday Samilicious Boy.  I love you more than you’ll ever know, and I’m forever grateful to be your mom.

Julie’s been a hot mess lately.   She’s clingy and sad, squabbling with her siblings all the time.   She pushes back every time I ask her to do anything (especially getting ready for bed) and I find myself getting more and more impatient with the tears and general whining and misery.

I’m not entirely sure why.  Probably a combination of no school and increased exposure to older siblings that she’s not quite old enough to keep up with.  But I think the biggest contributor is the lack of Marc.

Marc started a new job almost two weeks ago, and there’s an intense six week training period.  He leaves the house every morning before she gets up, and on the one or two nights a week he gets home before she goes to bed, he’s inundated with homework.

Of all of the kids, Julie is the one closest to her dad.  In terms of straight up one-on-one time, Julie has always gravitated towards him.  He plays cards with her, so many cards, and reads with her at night.  She’s a Daddy’s girl, much more so than Jessie was at this age.

The schedule is brutal for him (although from my perspective, it’s actually so much easier home, because he’s so much less stressed and unhappy.  He likes what he’s doing – and that makes an enormous difference).  But even with the craptastic schedule, the older two kids still see him a lot more than she does.  Jessie crawls into bed with us every night for a half hour or more, to hang out and talk.  Sam sleeps in our bed occasionally when he’s feeling a little disconnected, and is often up later when he’s home or up early before he leaves.

And it’s also important for me to remember that seven is a tough year for my girls.  Really, five through ten were hellish for Jessie, and it looks like Julie is going down that road too.  They’re so much alike (which you would think would lead to a greater sense of empathy on Jessie’s part – but sadly, not so much….).  There was a reason I called Jessie “Misery” for years as a nickname.

We’ve only got another four weeks to go – and then Marc’s schedule should get much, much better.  I’m trying to incorporate more play dates – to give her exposure to kids her own age, and let her get out of the shadow of always being the little one.  I’m going to work with the older two as well, try and get them to be a little more empathetic, a little more loving.  We all need a little more grace in our lives, a little more effort put forth to make our lives a little better.

And if the payoff is a happier, more content Julianna – we all win 🙂

I have pep talks I give myself.

I’m kind of a pep talk queen.  I say that modestly, but really, I’m super good at summing up all of the good things going in any situation, and reciting it back in a cheerful tone of voice.  People seek me out (and by people, I mean my mother).

But either way, I also find that I’m better than almost anyone at cheering myself up when I start to sink down into a vague depression about Sam.  Because sometimes, it’s hard not to fall into it.  It’s hard not to just feel SAD about the struggles he faces, about the roadblocks that he’ll have to overcome and to question why it all had to happen to him.  My sweet, sunshiney little boy – why does HE have to struggle with all of this?

I had bad dreams last night.  Not terrifying, horrible dreams, but unpleasant ones.  I dreamt about Sam starting to have seizures, and holding him while he shakes.  And then when I’d pull myself out of the dream, I’d start panicking about all of challenges ahead of him.

The reality is that we’re all born with a certain set of challenges and advantages ahead of us.  We are born into a family that’s either incredibly supportive and loving or abusive and brutal or somewhere in between.  Sam’s got Marc and I, and we’re both incredibly smart and focused and involved in his education and emotional health.  Not to toot my own horn, but I’m really in-tune with him emotionally, can pick up on his cues and usually alleviate his anxiety and fears quickly and with minimal embarrassment for him.  He’s got strong, loving relationships with all four of his sisters, and is especially close to Jessie and Julie.  He’s intellectually curious, and picks up information easily and retains it well.  I don’t know if he was an auditory learner before the accident, but he absolutely thrives at being able to retain the information when he hears it out loud.

I’m still sad today.  Which doesn’t help anyone.  But the reality is that Sam does have so much going for him – so much more than most people do.  He’s a smart, smart kid, with a huge heart and so sweet.  He’s got me – and while I may feel as though I’m stumbling thru this, the truth is that I’m right here beside him, fighting for his education and his emotional health with all I have.  We’re light years better than we were at this time last year.  We’ll be in an even better place by next year.

I got a call this morning at four thirty, there is a missing nine year old boy in my neighborhood.  I immediately checked on my sleeping ten year old boy – just to confirm that there wasn’t a rogue kidnapper targeting tween boys, but he was okay.  I’ve been mildly freaking out ever since, thinking about that poor mom, not knowing where her baby is.

Finally fell back asleep, only to have Marc come in and lecture me because I inadvertently cut his hand by throwing away broken glass.

Fell back asleep again, just in time for Lucky to start seizing.  Pee, poop and foaming at the mouth, everywhere, Marc stressing out because he had to leave, and I ended up violently throwing up because it all just too much for poor mama.

Dog bathed, floor bleached and mopped, husband officially out the door (after heroically bathing the dog and thank God I actually had done laundry last night so he had a clean shirt to replace the one that got soaked by Lucky).  The poor dog is dozing on the couch now (lucky bastard), and I’m quietly sipping my second cup of coffee, and wondering if it’s a bad sign that I want to brew another pot before seven o’clock.

I miss Julie like you wouldn’t believe.  She survived her first sleepover last night and while most of me is happy and proud of my little girl, I miss her too.  So much.

It’s not even six thirty, and I feel like it’s noontime.  Not an auspicious start for summer vacation.

I remember the first time I saw you, when I couldn’t quite catch my breath, and couldn’t stop shaking from the anesthesia, and I looked in your eyes, and suddenly, everything settled, and I was me again.

I remember the first time you stopped crying when I whispered “shhh,” and I was convinced you were the most brilliant child ever.

I remember when I accidentally dropped you off the chair, because I was used to laying you beside me after nursing in in the hospital, and oddly enough, the rocking chair didn’t provide that same protection.

I remember when you were crying and crying at two o’clock in the morning, and I didn’t know what to do next, and your dad suggested that I go sleep in the car, and take you with me.  In February.

I remember the way you’d sob and fight and cry every night before falling asleep, crushing all of my dreams of “never letting my baby cry herself to sleep.”  My baby needed to cry to sleep, but dammit, you did it in my arms.

I remember the way you’d fall asleep on my chest, every night.

I remember the way you crawled until you were a year and a half.  Like walking was just not worth the effort.

I remember the way you dozed in the pram, and I’d walk for hours in the sunshine.

I remember your first word was “Dada” but you’d say my name all the time.  Like “Mama” was code for pay attention to me.  You said it when you were happy, when you were hungry and when you were said.  Mama was your way of communicating.

I remember the way you needed stories and songs and hushing, every night.  Until I was pregnant with Sam, and too tired for the elaborate bedtime routines, and you adjusted to falling asleep to political commentary – I’d record George Stephanolopolis every Sunday and watch it over the week to put you to sleep.

I remember when you cried so hard, all the time, and nothing I did worked.  I tried comforting you, yelling at you, ignoring you, and in the end, just accepted that you had big emotions, and all I could do was try and help you survive them.

I remember watching you trying to navigate being the little sister, the middle sister, and the baby all at the same time.

I remember how you danced off to kindergarten, and Sam cried way harder than either of us, because he was so mad that I let you go.

I remember how much you loved being a big sister, and how excited you were about wearing matching dresses once Julie was born.

I remember how you struggled in elementary school, when you didn’t fit in, and didn’t know why.

I remember when you fell in love with To Kill a Mockingbird.

I remember when you found out about GSA, and how desperately you wanted to go.

I remember how absolutely delighted you were when you go in, and how thrilled you were, right from the very beginning, to be a part of it.

I remember your first Model UN conference, and how proud you were to be a part of that program.

I remember how hard last year was for you, how you fought and struggled and stood up to everything that happened.  How you were a source of strength for the entire family.

I remember watching you blossom this year, how you very deliberately set out to be happier, to be a part of everything, and systematically accomplished that goal.

I remember every single second, from the first time I threw up with the morning sickness, to the first time I felt you move.  The first contractions, the first time I saw you.  The last time you nursed.  The first steps, the first word.  Every single second, right up to watching you walk across the stage to accept your eighth grade diploma.

Being your mother is one of the best and brightest part of my life, and I’ll forever be grateful.

Sam’s an atheist.  I like to think he’s an agnostic, but the truth is that my boy is firmly convinced that there is no God and there is only science.  You can only believe in what you can prove – and why would I want him to believe lies?

This is just… wow.  I’m struggling with this.  I’ve always said I don’t care if my kids grow up to be Jewish – because truly, I don’t.  My converting to Judaism wasn’t done because my mother had somehow failed to keep me Catholic.  I patted myself on the back – I’m not one of those parents who’s all invested in their child’s religious future.  I’m not going to put all that weight and responsibility on my kids’ shoulders.  They can be whatever they want to be, believe whatever they want to believe.  It just never occurred to me that they wouldn’t believe in God.

There are a couple of things I keep reminding myself –

1 – This isn’t about me.  My journey with religion, organized and haphazard, is my own.  His relationship with the Divine is his.  And it’s not a sign that I’ve failed him somehow.

2 – Sam doesn’t handle uncertainty well.  He never did, honestly, but he’s a lot less capable of dealing with it now.  And you can’t PROVE God.  You can prove science.

3 – The kid has been thru hell.  His life is a lot better now, but the reality is that he learned lessons that some people never have to face.  He learned that he’s not safe, that tragedy happens all the time, with no warning, and there’s no way to really protect yourself 100%.  He learned that even when I’m standing right there, he can be unbelievably hurt.

4 – He’s probably got lasting, if not permanent, damage to his optic nerve that will impact him for the rest of his life.

I suppose it’s entirely natural that he’d be questioning the presence of a benevolent God at this stage of the game.  There’s a part of me that’s wondering why I’m not questioning it.

But I’ve never questioned whether or not God existed.  I wandered my way from Catholicism to Paganism and Wicca to Judaism.  And it’s always been absolute for me.  Of course God exists.  You can call it whatever you want, the Divine, God, Goddess, angels – but there’s SOMETHING there, and I feel connected and a part of something bigger than myself.  Bigger than my family, than this world.  It’s as clear to me as the fact that the sky is blue.  It just is.

I’m trying to be all zen and chill about this too.  Marc is a questioner, and has been for as long as I’ve known him.  I’ve never felt comfortable (even after converting to Judaism) with organized religion.  Judaism makes sense to me, in part because it’s a religion based on actions.  It doesn’t ask me to believe, just to act.  Sam’s got his own journey – and it’s going to start in the foundation we’ve built for him.  With holidays and Shabbat and a Jewish identity.  He’ll have to decide where he goes from here.  They all do – it’s just that the girls aren’t in the same place.  Jessie’s a questioner as well, but she’s firmer in her Jewish identity.  And Julie – my Julie’s still pretty sure that she wants to be a rabbi.

Actually, when I think about it now, Sam’s living up more to his heritage, as my son and as Marc’s son – he’s a questioner.  He’s a thinker, and he takes nothing for granted.  He believes in what he knows, and what he can prove.  I can work with that.

I just don’t want him to be alone.  And hopeless – and for me, belief in God has always been a source of strength.  Even when it was hardest for me, after I lost the twins, and nothing made sense – I still believed in God.  I still believed in SOMETHING.  Maybe he get there again.  Maybe he won’t.  But it’s his journey, not mine, and I need to remember to step back and let him have it.

It was a lovely weekend.  It still seems surprising to me, that things are so EASY now.

Friday night, we decided to go out for Marc’s birthday.  Going with all five kids to a restaurant is not an easy feat, because they all get loud and crazy, plus restaurants are still a little tricky for Sam.  Adding to the complications was that Marc works an hour and a half a way, in a job that rarely allows him to walk out the door at five o’clock.  So we went to the mall.

I know, it seems a little goofy, but it was actually brilliant.   The three older girls danced off as soon as we got there, and I took the younger two wandering all over the place.  We did the escalators an absurd number of times, and wondered about what to eat.  It’s hard with Sam – still.  He likes a lot more than he did, but making choices can still throw him for a loop, and he needs to really see the food (and smell it, especially) before he’ll know if he likes it or not.  So he had a minor panic attack, but I pulled him away from everyone, and talked him down.  He ate french fries and pretzels for dinner.

Saturday morning, I got up early and went to work.  Marc was home with the kids, and by the time I got home, my head was throbbing and the house was in shambles.  We were supposed to go to a party that afternoon, but ended up canceling and staying home.  We napped (oddly enough) and just chilled out all day.  Sunday wasn’t a lot different.  Instead of working all morning, we went to a wedding for some friends at the Beth Israel.  Then we came home.  It was a rainy afternoon, and we just chilled, played card games, read a lot.

It’s still so lovely, just to be at home, with everyone happy and not in any pain.

The school year for the girls is almost over.

The next two weeks are a whirlwind of field trips, doctor’s appointments, first semi-formal dances and awards.  Graduations (for Lilli and Jessie) are coming up.   Eighth and first grade are almost over.  They both had a really, really good year.

After the chaos and confusion of last year, this was really a year of regrouping.  They both settled in, and reverted back to where they should be.  In a lot of ways, Julie just kept going.  She’s so much younger than Jessie, and it was easier to keep her steady.   She had Sue Gravel, first of all, and we started her seeing a therapist last summer.  That was real source of support for her too – and she was able to work out a lot of the trauma around the accident and the months afterwards.   This was a tough year for her, in a lot of ways, but she’s doing so well now.  We were able to discontinue the therapy and she’s finishing up the year in a much stronger, happier place.

Jessie is the one who changed the most, of the two girls.  She’s much happier this year, much more social and content with who she is and what she wants.  She pulled in so much in seventh grade, and it’s been lovely to see her blossom this year.  Her dreams are back, she laughs more and socializes easier.  I think last year was tough on her in so many ways – she revamped all of her college and professional goals to working with children traumatized by medical issues, researched colleges that would be best for that major.  But this year – she’s back to being a Communications Director, working at the White House (she wants to be either Toby or CJ from West Wing).

My first year of homeschooling is sort of over.  I plan on continuing thru the summer at roughly this same pace – it’s more relaxed, and there’s a huge focus for me on getting him healthy and out of the house.  We covered a LOT this year.  I started his math curriculum from scratch, and we went thru the first seven and half books in the Life of Fred series.  I’m planning on spending the next six months on getting him thru the next five books, and then we’ll dive into the middle school curriculum.  We spent the fall on electoral politics, exploring the history of elections in the United States and the women’s right to vote history.  Then we started at the very beginning, and completed the first book of Story of the World (ancient history) and are mid-way thru the second book (up to the Middle Ages).  Science – we did mostly biology, exploring biomes and different animals that live in them.  We did most of one biology textbook and then switched to a living book on Zoology that he LOVES.  In terms of ELA – he read (or listened to) close to 100 audiobooks.  We did all of the Rick Riordan series (a couple of times) which dovetailed perfectly with the ancient history curriculum, and then he listened to a whole bunch of other authors as well.   We studied parts of speech with a formal ELA textbook, as well as madlibs.

My plans for next year are to continue with both the science, history and math curriculum.  I’m going to add in keyboarding and spelling next year, as well as more formal writing.  He’d also like to add in cooking classes, with the goal to start making Shabbat dinner every week for us.

We throw a lot of parties at our house.  Nothing huge, just a general sort of open house thing, where we make a bunch of meatballs and some veggie stew thing, and the kids run around outside, and the adults all hang out and talk.

And Memorial Day 2017 will go down as one of my favorites.

Sam is still recovering.  After this past year, I’ve gotten used to my very anti-social boy.  I’ve gotten good at not apologizing for it, and giving him the space he needs.  If he wants to opt out of a party, and sit in his room with a video game and an audio book, I let it happen.  I’m used to him panicking over what to eat, and diffusing the situation before it escalates.  It happened so often, it just became my life.  This was just the way my life was.

But yesterday – he was… back to Sammy.  We had Abby-with-a-bow over, and Julianna was in heaven.  They spent all day outside, running around and creating chalk creations.  Coating themselves with chalk mud, purple chalk mud.  A couple of his friends came over, and I assumed that Sam had retreated to his room.  I was shocked and in awe when I realized that he was OUTSIDE, running around with the other kids.  Even after we had pulled the girls in, and thrown them into the tub (one I had to drain twice because there was so much chalk and filth on those two), Sam kept playing with the boys.  He was a delightful host, dispensing ice cream and providing video games entertainment.

I don’t know if I’ll ever get used to this.