I read a lot.  One of the things I read a lot about is parenting – and inevitably, I end up reading about special needs kids.  None of my kids were technically special needs, other than Sam’s anxiety diagnosis, they are all neuro-typical.  I claimed the special needs label a while ago, because Sam was.  I actually found myself using it without consciously thinking about it, when I was trying to enroll him into religious school, and I couldn’t get them to understand that he needed things the other kids didn’t need.  Other kids would be fine if their parents just dropped them off and left, two of mine would be fine if I did that.  Sam would scream and rage for two hours.  His had different needs – special needs, if you want to get technical.  He was (and is) different.

The point that I’m trying to make is that I’m fairly used to thinking of him as dealing with more challenges than the average kid.  But anxiety looks so simple now – I wish that it was just anxiety.  Now we’re in a new place, and I almost look backing longingly to when I just had to deal with school phobia and separation anxiety.

I deal with what happened to Sam, with what is still happening with Sam, and what will happen in the future all the time.  I feel a little crappy about it often, I process it, I grieve and I get mad.  I let the feelings come and process them, and then I move on.  Because that’s what you do.

Marc handles it differently.  He doesn’t process a little bit all the time – he holds it all in, and then it bursts out in this flood of sorrow and sadness and regret.  Yesterday it hit him that he wouldn’t be able to play catch with Sam again.  Wishing he had spent more time playing with him when he could, before the accident, before he lost the ability to see a ball flying at him and be able to respond.   Grieving for what we’ve lost, for what Sam lost, for what we, as parents, have lost.   Life is going to have different challenges, for Sam, different from the challenges that the girls will face.   And while I know the counter argument is that of course, everyone has a different path and different challenges and rewards – it still seems so monumentally unfair that this kid has to go thru this.

I know feeling badly for him doesn’t help.  I know that lowering my expectations, and coddling and protecting him isn’t going to make it easier for him in the long run.  But it’s so hard – forcing him out of his comfort zone.  When it was just anxiety – it was easier.  I could force him, because I knew it was for the best.  But forcing him when he’s already socially anxious to the point where we had pulled him out of public school just before the accident – and now he literally can’t see what’s coming at him until it’s right on top of him… God, just going out in the world must be so much harder for him.

He goes.  Even though I worry that I’m not pushing him enough, I still drag him out into the world.  He cried and begged to go home when we went to the beach the other day, and we got through it.  He found the strength, and went.  And when the waves would clobber him, and he’d come staggering up out of the water, and beg to go home again, I’d wipe his face, get him a drink, and wait it out.  He always went back in.

Because, in the end, as much as I wish this hadn’t happened to him, as much as I wish he hadn’t had to learn these lessons now, at this age, the truth is that he has learned that the world isn’t safe.  That terrible things can happen with no warning and that your parents can’t keep you safe.  That you can feel horrible, excruciating pain, and still come out on the other side.  That the worst can happen, and you can survive.  He’s older now.  He’s wiser, and there’s a wisdom and a strength that comes from going through something like this – as much as I wish it hadn’t happened.  He’s come so far, struggled so hard.

I cling to that.  I remember when he was so scared to go outside, when crossing the street terrified him, and when driving down the road was panic-inducing because it was entirely possible to him that every single car could careen into us.  I remember when every cloud had the potential to become a tornado, when every tree limb might fall on the car if we parked under it.  He’s past feeling like that now.  He’s able to adjust, to feel the fear, and then move past it.  There is a resiliency now, and strength.

This summer is… a little off.

Mostly, it’s because of Sam’s injury.  And the fact that we’re down to one car.  There’s a whole lot of sitting and hanging out, netflix and minecraft and cooking and cleaning and laundry, always the laundry.  Sam literally never wants to go do anything – not that he won’t, because he will, but he never WANTS to.   How much of that is just inertia, and how much of it is the reality that he can’t see much more than a couple of feet in front of it, I’m not sure.  Inertia – that I can overcome and push past, but forcing him, all the time, to do things that are scary and hard… that’s a lot tougher to talk myself into.  Add to that equation the reality that we’ve got one car, and money is always, always a consideration… sometimes, most of the time, it’s just easier to let it go.  Let each kid do whatever they want, and a lot of time, that’s just chilling out with a screen.

I’m researching homeschooling and unschooling and letting kids follow their own interests and valuing and accepting and not pushing them into doing what YOU want to do all the time.  That factors into the general sense of live and let live thing I’ve got going on.   I work so little, only six hours a week out of the house, and another four at home, but work takes up time too.

The summer keeps moving on, we’re more than halfway through it at this point.  And the next month stretches out in front of me, with nothing scheduled other than school shopping and finding Jessie more clothes (because she literally has next to no clothing – she outgrew EVERYTHING).  I’d like to fit a few trips to the beach in there, maybe the movies (although probably not – I don’t think Sam can see it… and as much as the girls might like it, I think the cost to Sam to have his sisters get to go and and enjoy it… it’s this constant balance between his needs and theirs, how much to accommodate the vision loss and how much to not make the girls suffer because he is).

Last summer will forever be known as the Great Hair Crisis of 2015 (because Jessie accidentally got a terrible hair cut and sobbed ALL.SUMMER.LONG about it).  This summer will probably go down as the summer where we did nothing.  But it’s been lovely, just… a little boring.

It’s Saturday night, and we’re all scattered around the living room.  Our living room isn’t that big, so my feet are resting up against Sarah, and I could kick Lilli, Julie and Marc with no effort whatsoever (to be clear, I don’t want to kick them, just pointing out that we don’t have a lot of space here).  The girls are playing a board game that we lost the instructions for, and nobody really knows how to play it.  Marc and Sam are playing minecraft together.  Lucky is sound asleep, curled up next to Sam.

It occurs to me that I don’t have this many more of these left.  Lilli is going off to college next year – and in a real way, it’ll be the end of an era for us.  Having all five kids hanging around, on a random Saturday, arguing and playing and fooling around together.  Her life won’t be HERE, not the way it is now.

It’s odd, as a stepmother.  Because she’s not my daughter, but she’s not NOT my daughter either.  And my life will change when she’s not here anymore.   I will miss her, more than I can say.  I’ll miss her being the oldest, being the one that Jessie always likes, the one that helps me cook Shabbat dinner, and is always up for a day trip.

But more that that, I’ll miss this.  I’ll miss having all five kids, bopping around the living room, all within kicking distance.  I know that there will be other blessings – that as the kids get older, things change and adapt. Four years ago, we couldn’t have done this.  Actually, six months ago, we probably couldn’t have done this – because Julie isn’t the best at playing big kid games.  So there will be, undoubtedly, new things that I’ll love.  But I do wonder how many more of these nights I have before all the kids grow up, before Saturday night means a night out and not a night gathered around the coffee table with your siblings and parents.

Not a very notable title – but that’s where I am.

I work outside of the house very minimally.  Six hours a week – and I’ve got an experienced, Red Cross certified babysitter just hanging around the house for the most part, so she babysits.  Added bonus that Julie goes to camp, so really, it’s just a matter of Jessie and Sam not killing each other two mornings a week.  Marc works five minutes away, and can come home immediately if they call and need him.

Except that this week, Jessie is in Boston at the Model UN camp.   A fabulous, wonderful experience for her – but it means that she isn’t home to babysit.

Yesterday, Sam was home by himself, which isn’t a big deal, in and of itself.  He LIKES staying home alone, or at least he always did in the past.  Marc had an on-line class he had to take and was completely unavailable for the morning.  I ended up coming home early, and we switched things around.  If Sam doesn’t like being home alone, then we can’t leave him home alone.   My mother would come out today, Marc would leave work early three days this week to pick Jessie up in Boston.  We could DO this.

Except… Marc is taking an on-line class this week, and had to be at work, logged in and focused by 10:00.  Total miscommunication – he thought I knew that, I had no idea and failed to tell my mother she had to be here by nine thirty – there was a ten minute window where Sam was going to be home alone.  I was already at work, and Marc waited as long as he could, but had to leave.  My mother was ten minutes away, and would be here – in theory, it should have been FINE.

Of course, that was the ten minutes where Lucky had to have his seizure.

Sam was a disaster after that.  He kept calling me on the phone, begging me to come home, sobbing and pleading with me.  Shut himself into my bedroom, and refused to talk to my mother.

It was like a perfect storm, where everything combined to completely wreck my little guy.  Normally, his older sister is here, and normally, Marc is available to run home at a moment’s notice.   Normally, my dog doesn’t have a huge seizure.  But all of those things combined and poor Sammy…

Everything is fine now.  Lucky is fine, as he always is after a seizure.  Julie had a lovely morning hanging out with her Grammy, Marc finished his course, and my mother was able to bring back Jessie’s glasses that she’d left over her house last week.  But it really reinforced how impossible it is for me to be working.

When I’m at work – it’s blissful.  I LIKE my job.  I have fun when I’m there, I like the people I work with, and we need the income.  But… five phone calls with Sam having a full-blown panic attack doesn’t make for a productive work day.

I feel stuck – like I need to work, and I could work.  I could so easily up my hours and be bringing home a paycheck that would make a huge difference for us – but even if we discount today (because really, this was a situation where absolutely everything went wrong), I still need to BE here.  I need three or four hours each day when I can homeschool him.   And those hours can’t be when I’m picking up at junior high or elementary school, dropping off at religious school, trying to get dinner/bath/homework done – I need to be able to focus on teaching him.  He can’t work independently yet – he can’t even see well enough to do that.

And I’ve got the worst damn headache.

Not really.  I mean, he can.  He can see to walk around, and to play outside.  He can play minecraft on the kindle.  He can color.  He can see – but he can’t see television.

Harrison invited him over to his house for the upcoming weekend, to play Minecraft on the Wii U – and he was so excited.  Right up until this afternoon, when he realized that he can’t see the television.

He cried.  Just sat down and cried, because he wants to be able to see, to do the stuff that he always used to do, and he can’t.

There’s nothing I can say in those moments.  There’s no way to soften it, or make it better.  He can’t do what he used to be able to do.  I can tell him that we can talk to the doctor’s and see if we can get better glasses, but that just gets him more upset, because he’s terrified of the doctor, and hates wearing glasses.  So I sit, and wait it out.  Once he calms down, I can get him to come sit with me, and I wrap my arms around him, and tell him that he’s absolutely right – it ISN’T fair, and he’s got every right to be angry about it.  And that Daddy and I are so proud of him, for the way that he finds a way to be okay, to look for things that he CAN do and CAN see.  I get him more ice water, and another bowl of white rice – all the while, feeling like my heart is breaking in two.

I tell myself that I should be grateful for all that he can do.  Be grateful that he isn’t in pain, that he’s got all his arms and legs, and he’s physically healthy.  That he can eat so many more things, like chicken fingers and pancakes and turkey bacon and hot dogs.  Corn on the cob.  That he got his hair cut yesterday, and he happily went for a walk with me earlier and asked to go for the “long” walk with Lucky instead of the quick up the street thing I do.  There’s so much to be grateful about – but dammit, there’s a hell of a lot to be angry about too.  Because my little boy can’t do what he loves.  He can’t go play Minecraft on the Wii U, and that’s pisses me off.  I’m furious and sad and trying so hard not to focus on that.  Because he’s got to live with his – he has to live with the limitations and the handicap, and I have to find a way to make that okay.  If he can do it – if he can find a way to make the intolerable, tolerable, then I’ve got no business wallowing in anger and frustration.  He deserves better.  All the way around.


Julie’s going to tennis camp this summer.  It’s free, and matches perfectly with the hours where I’m at work, and those two reasons alone are enough to make this awesome.  Add in the fact that she’ll get exercise, activity, socialization, and learning a new skill.

The only hitch is that she hated it.

We started her last week, and it was rained out the first day (downside to free camp is that when it rains, there’s no camp).  The following day was Sammy’s birthday, so I let her stay home.   Marc brought her the following day (it was a Thursday), and she was so miserable and so desperate for him to take her home, she actually ripped out his pants pocket by tugging on it.  Friday, I agreed to GO to camp with her, I’d sit in the bleachers, until her dad could come and we’d switch off (Sam had an appointment I had to bring him too).  She was better on Friday, still clingy, but not crying and even participated.  A little.  For ten minutes.  Out of two.

Once I left though, it got better.  Marc said that she played, had fun, and was actually excited about going to camp the next day – only it was Friday, and we didn’t have camp until Monday.

I hate making my kids do things they don’t want to do.  No surprise, nobody likes that.  But when it’s a no-brainer, like vaccinations, or bloodwork, or homework or going to bed… I do it anyway.  When it’s something like this – going to camp or school – it’s SO hard to make them do it.  Obviously, with a kid with an anxiety disorder, I’ve been doing this for years, and Julie is very different from Sam.  Sam never got better at it.  He wasn’t a little misty about going – he was full-blown kicking and screaming.  Jessie was more like Julie – reluctant, but not terrified.  But when Julie woke up this morning and the first thing she said to me was “please don’t make me go, Mommy, please, I don’t like camp…” God – I wanted to let her stay home.

I didn’t.  It wasn’t an easy morning, she fought it hard, but got her little self dressed, and walked into camp.  She asked, very quietly, if I could please take her home, once we got there, but I kissed her, and told her that I’d be back  before she knew it – and she nodded and went to go sit down.

I think we turned a corner today, I picked her up and she was bubbling over with enthusiasm.  She LOVED camp, was happy about learning tennis, loved reading, had fun.

Julie isn’t Sam.  And it’s hard, when you’ve got one kid who totally has special needs in one area, to not compare them – to wonder if I had just been more firm with Sam, if I had powered thru his screaming and crying, would he have been better off?  But then I remind myself that I DID.  He didn’t calm down, he didn’t adjust – because his issues aren’t Julie’s.  And even if he had magically separated, and had no anxiety issues – he’d still be dealing with the vision issues, the PTSD.

In other wonderful news – Miss Jessica is off at Harvard Business School this week, attending the Model UN Global Initiatives Conference.

Today’s another huge milestone for you – in a year when you’ve faced more struggles and challenges than I ever wanted for you.  It’s a day when we celebrate all that you are, and all that you will become.  Ten years ago, when you were born, I had no idea how to be a mother of a little boy.  And you knew that – but you were wiser than I was, right from the start.  You knew, instinctively, exactly what you needed and how to best achieve it.  You taught me, every single day, how to live in a world that seems scary and hard, how to dig deep for comfort and confidence, and I’ll never be able to describe how much I love you for that.

This has never been more evident than this year.  You’ve lost so much this year, and in so many ways, it’s been hellishly hard.  But I’ve watched you grow, and learn, and face reality and force it to bend to your will.  You find a way, over and over again, to make the impossible okay.  You find a way to cope, to adjust to the limitations and live your life.

This is the year where you learned the geography of the hospital, leading us to the doctor’s office.  This is the year you learned to speak up, to force adults to listen to what you were saying.  You learned when you couldn’t fight, when you had to get thru what was scary and not run away from it.   You grew up this year, in ways that have stunned me, scared me and made me sad and proud and so, so happy to be your mother.

Happy birthday my Sammy boy.  I can’t wait to see what the next ten years bring.

Ten years.

Sam has always been the child who taught me.  Sammy is the child who pushes me out of my comfort zone, who forces me to dig deep and be the mother he needs.  This year is no exception.

I’m finding today to be bittersweet.  It’s his birthday, and I want so much for him to be able to celebrate like he does every year.  But he can’t, not the way he used to be able to celebrate.  He can’t really see anything more than a few feet away from him.  He won’t participate in an eye exam, and the glasses I begged for aren’t helpful.  So he doesn’t wear them.

I worry about him.  All the time.   I wake up in the middle of the night and start to think, and then I get upset and end up lying there forever, thinking about his future and what it’ll be.   I worry and worry and worry – it feels like a bad dream and I just want to have it all over.  I want his face to be perfect, without a scar all over his chin.  I want him to be able to see and read and write and draw and play legos.

This is a really hard birthday for me.

I’m trying to find solace and grace.  Trying to be grateful for all that he has – his diet is getting better, he can eat a whole bunch of different things now.  He can run around with his friends and go swimming.  There’s a big long list of stuff that he’s added back into his life, and it helps nobody, least of all Sam, for me to looking back wistfully and panicking about what the future might hold.