Not your average summer

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.

How many more of these do I have?

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.

My head hurts

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.

He can’t see

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.

 

Julianna and camp

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.

Happy 10th Birthday My Samilicious Boy

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.

Happy Birthday My Sammy

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.

 

Summer

Every year, I’ve always thought about the fact that I only get one summer.  Only one summer when the kids are this precise age, one summer when this is my life.  This summer is especially sweet to me, because I didn’t always know that I’d get it.  The reality is that my son almost died.  One inch lower, and the crash would have probably broken his neck.  My son almost went blind.  If we hadn’t had the surgery done when we did, he would have lost vision in both eyes.  There were so many times this past spring, when the idea of a summer, a season of playing outside, with sprinklers and bug spray, of sunscreen applications and late nights.  Sleeping in, popsicles and ice cream, ponytails, swimsuits and bubbles – all of that seemed so far removed from the reality of hospital beds, conflicting diagnosis and rows of prescription bottles.

But somehow we made it.  The sun is shining, my kids are all here, and while it’s not like summer of the past, it’s more than I thought I’d have.  He’s not 100%.  He’s still coming to grips with vision loss, he’s still handling navigating a world where it’s kind of blurry and a lot scary, where the world can change in an instant and without warning.  But he’s my boy, and he’s brilliant and funny and courageous and still hopelessly addicted to minecraft.

I’m cautiously balancing going back to work for a few mornings a week with being at home with my babies.  My teenager (it’s my first summer with a teenager!) who’s growing up so fast, but is still my baby girl.  She’s still incapable of following a recipe, she still throws all her stuff on the floor, and she stays up later than I do most nights.  My baby girl is still my baby, but a first grader next year.   She’s reading to me at night, and limping around the house because she likes to use Jessie’s old crutches.

I’ve got a fat little dog, who sleeps all day, begs for food at dinnertime, and then sleeps all night snuggled up to someone (he rotates – Julie likes him in her bed, Jessie usually throws him in my room in the middle of the night because he squeaks in his sleep).  He’s barely housebroken (happy to go outside, as long as he happens to be outside when the urge to go strikes.  Suffice to say, he’s also happy to go inside as well), and still having seizures occasionally. He fits into my family like he’s always been here, and I can’t imagine how I made it so long without a dog.

Marc is busy, busy, busy rebuilding his business.  This accident, and the anxiety issues for the two months before, really impacted everything about starting his company – but he’s getting it back.  Having me home makes everything easier, on every level.   Someone asked us the other day, how we had handled the past few months.  So many couples with sick kids, with financial stress on top of it, so many couples don’t make it.   But for us – it’s not just that we survived it.  We handled it exactly the way I would have predicted – we didn’t blame each other, we leaned on each other.  I couldn’t have done it – couldn’t have handled the doctors and the medicine and the confusion and the fear, without him.  I couldn’t have done any of it without him.  We would not have survived without each other.

And so we’re here.  Summer.  There’s a lot more staying home than I’d like, in an ideal world.  There’s a lot more minecraft, a lot more netflix than I’d like.  Jessie made goop earlier, and Sam sat on the floor and colored with Julianna for a while.  We’ve got a playdate scheduled for later on today, and I’m still behind in laundry.  Some things never change.  Even though it is my only summer with a 13, 10 and 6 year old, it’s enough like the summers in the past that it feels familiar and safe.  I don’t know that I’ll ever take that for granted again.

Notes from June

It’s been a good month.  We did start on a particularly low note, I’ll be honest.  But June will go down as the month where it all turned around.

– Kids are out of school for the summer and it’s glorious.  Not all the time, sure, there are squabbles and so, so many dishes.  But the schedule is relaxed and laid back, bedtime is devil-may-care, and they sleep late most mornings.

– Sam is healing.  Slowly in some things (specifically eating), but once he started, the momentum is wonderful.  He’s open now, happy to go out and do things.  I’m not saying that it’s all bliss, but the issues we’re dealing with now, the anxiety, the vision problems, the diet – all of those are NOTHING compared to what it was.  I’ve unpacked my hospital bag, the next appointment is weeks away, and my little boy is back to himself.  He’s been thru so much, and has grown and changed and is a different kid in a lot of ways – but he’s still Samilicious Boy, and I’m so so happy about it.

– The school system – wow, they are really not at all interested in working with me.  We are planning on homeschooling him for at least the next year, and maybe longer.  I’ve had several conversations with the school system, and was shocked and dismayed to realize that making the decision to homeschool put us on two very different sides.   I was naively assuming that we’d all be working towards the same goal – what’s best for Sam.  Yes, homeschooling is probably necessary, given that he’s lost half the year of third grade, and I don’t want him held back, but I assumed that they’d work with me to get him back into school.  But it was clear that they had no interest in even talking to me, now that I’ve pulled him out.  In fact, the only takeaway from my last conversation with them was that they were trying to intimidate me with misinformation (I have the legal right to homeschool – they don’t get to give me permission, and they can’t deny my right to do so), and assuming that I had failed my son by not educating him for the past few months (despite my repeatedly telling them that he had been in and out of the hospital, had emergency brain surgery, and every medical professional I had spoken to assured me that I needed to get him healthy before even thinking about multiplication tables).

– That being said – I think that I’m going to continue, at least for now, with public school education for both my girls.  Very much on the fence with this – but they both like going to school, enjoy spending time with their friends, and are thriving.   It’s in the back of my mind as an option if things change – I think both of them would do really, really well homeschooling, but for now, we’ll keep it status quo.

– I’m going back to work.  Not more hours, necessarily, but I’ll be working from the office for two mornings a week.  It’s not a huge change, relatively.  It’s two mornings.   It feels more significant, just because I’ll be out of the house, working.  It’s a sign that life is going back to normal, at least a little bit.

– Julie will be going to summer camp!  There’s this lovely little FREE camp at Clark University – tennis and literacy, for three hours a day (perfectly coinciding with my hours for work).  It’s literally on my way to work, which delights me.  She’ll get a little physical activity, work a little bit on reading, and Aviva’s girls are going too – so it’s win/win for us.

– Jessie’s got her week at Model UN – and is actively searching for  babysitting gigs.  It’s a low-key summer for my girl, but that’s the way she likes it.  Glennys is coming down for a week in the beginning and maybe for a longer stay towards the end of the summer as well.

Lessons Learned 2015-2016

It’s been an… interesting year.  One kid in seventh, one in third and one in kindergarten, I started the year in a much different place than I’m ending.  Last year, at this time, I had just returned to the workforce after more than a decade as a stay at home mom.   And on my first day of work, my son threw up in the classroom and spent two hours in the nurse’s office because I had turned my phone on silent and didn’t get the call that he was sick.

There have been a lot of changes, some good, some scary, and some permanent.  Some will hopefully continue to change and improve over the next year.   We had three hospital stays, one broken elbow, three spinal taps, two CAT scans, three MRI’s, and four pairs of lost glasses and one emergency brain surgery.  We survived a bat mitzvah.  One of my best friends moved far, far away.  Everyone I worked with quit, and we got a dog.  Sam lost vision in one eye, Julianna learned to read, and Jessie won Best Negotiator at her first Model UN conference.   Marc opened his own office, and six months after moving in, is still unpacking the boxes.

So I’m limping to the finish line this June.  My goal for the next two and a half months is just to heal.  Spend time with my kids, with my husband, and with myself.  Walk my fat little dog, de-clutter the house.  Hit the beach – a lot.  Eat ice cream for breakfast, sleep late every day, and stop racking up late charges at the library.  Finish the blanket I started crocheting for Sammy five years ago.  Teach Julianna to ride her bike, coax Sammy back into riding his.  I want to be tan this year, I want to drink margaritas, and actually spend my Christmas gift certificate for a fancy dinner out with my husband.

The summer of 2016 is going to be a summer of rebuilding, of recovering and of discovery.  We’re going on field trips, we’re going to explore New England and take day trips and go camping.