Still here

It’s been an odd summer in many ways.  We started out strong, but then Lucky died.  That quickly spun into this three week disaster of Sam not sleeping at all night and only sleeping during the day, which effectively killed any homeschooling/summer adventures we had planned.  Then we got Elizabeth Mocha Latte Tallulah Boo Cohen, and quickly realized that having a sort-of-not-really housebroken baby puppy meant that we were doing that for the rest of the summer.

Despite all of that- it was still a really lovely summer.  Marc started his new job at the beginning of June, and there were six weeks of absolute hell, in terms of his schedule.  But it’s gotten significantly better.  Even when the schedule was a disaster, he was so much happier and lighter and more relaxed.  It’s a job that’s incredibly demanding on a physical and mental level, but it’s hard in ways that he’s super good.  He’s successful at it, and still has time to eat dinner with us a lot of the time.  That – more than anything – has led to an overall sense of family well being.

Jessie had her week in Boston, and worked her little butt off all summer on her homework for high school.  She’s finished with the tough stuff now, and reading a Harry Potter book for fun.  She’s thriving – she’s just this gorgeous, focused, and fun kid – if this is what high school looks like, I like it a lot.

Sam and I are still working on homeschooling.  The summer hasn’t been as productive as I would have liked, but he’s still learning and growing.  We’re plowing ahead in science, history, and math, and he’s continuing with his audio book obsession.  I’m looking forward to the next year – I love homeschooling, and I think it’ll continue to be the best choice for us.  For him.

My Julie is probably the one going thru the most change right now.  She’s growing up a lot, assuming more personal responsibility, taking on a more active and vocal role in the family.  She’s the little one, the baby, and it’s not always easy or fun to be in that place.   She and Jessie squabble all the time, and it’s frustrating because it seems as though they’re the same person, arguing the same point, just separated by seven years.  There are times when I’m wishing that school would start up, just to get them separated for a few hours.

Summer is winding down, and I’m looking forward to fall.  Pumpkins and apple picking, sweaters and sneakers, and hopefully some down time, some weekends when we’re all home and chill, and nights when we’re all together and happy.

Mid to late summer update

It’s been a summer.  A good summer, in a lot of ways.  Sam is SO much better, and we’ve been able to do a lot more.  Everything came screeching to a halt last Thursday when we had to put Lucky to sleep.

We’ve regressed to where we were last summer.  Part of is that it’s so damn hot that nobody wants to go outside and do anything.  Part of is that I want to save all the money I can towards school shopping and getting a new dog.  But a bigger part of it is that Sam has stopped sleeping.  At least at night.  He sleeps GREAT during the day.  But, as you can imagine, that doesn’t lead to a lot of quality time.

Jessie and Julie went back to bunk beds earlier this summer, and that involved a few days of cleaning and rearranging.  Then Jessie’s hanging rack, with all their clothes, toppled over under the weight of said clothes, which led to a few more days of cleaning.  We had to dig out the closet – and get rid of THIRTEEN bags of clothes that they had outgrown, stuffed animals that we were able to give up (it helped that Julianna was in the living room for most of that discussion).

Marc has been training all this summer in his new job – and while he’s much happier and more relaxed, he’s never home anymore.  Leaves the house before anyone gets up and gets home long after Julianna goes to bed each night.  But this is the last really rough week, I think.  Starting next week, he’ll have half days of actually doing the job, and half days of training.

 

It’s been less than a week

Less than a week.

We’re adjusting to the loss of Lucky.  It’s hard.  Jessie and Julie are grieving in easier ways, if that makes sense.  They get sad, they talk about it, they move on.

Sam’s stopped sleeping at night.  His appetite is off.

The not sleeping at night thing is the hardest to deal with.  He tries, but at night is when he misses the dog the most.  So he starts off okay, and then wakes up after an hour or so, and is up until after Marc gets up for work.  Then he crashes for the bulk of the daylight hours… which sets him up for being up again all night again.

I’m at a loss as to how to deal with it.  I’m worried about him all the time, but then Marc pointed out that there’s a reason that Judaism has the ritual of sitting shiva.  When you lose someone, you need time to exist outside of the world’s expectations.  To miss him and be sad, to do what you need to do to get thru the day, or the night.

It’s been less than a week.

I’m trying to give him this time.  We took a break from homeschooling (we’re on a reduced schedule during the summer anyway).  He’s focusing on audiobooks and youtube videos.  He’s not depressed, at least not presenting that way.  He smiles and laughs, is openly affectionate and loving.  But he doesn’t sleep anymore.

At the mid-way point

We’re not done with childrearing.  Obviously.  With a seven year old, we’ve got at least another eleven years before she ships out for college.

But we’re at the point where our kids are becoming adults.  With Lilli heading off to college this fall, Sarah going into her junior year and Jessie starting high school, our biggest kids are either out of the house, launched into adulthood, or at least with one foot out the door.

I’m trying to adapt to being a mom with older kids.  With adult kids.  Because that’s what we’re talking about – adult kids.  They aren’t just older, we’re not just talking tweens and early teens.  Lilli is actually a bonafide adult.

I’ve still got my baby.  My little one, who whines too much, and pushes the limits of my patience sometimes.  The one who still curls up into me at night and won’t fall asleep unless she’s got my arm wrapped around here.  I’ve still got Sam, and while he’s older than Julie, he’s still within the “kid” range.  I still do a lot of hands-on parenting with him.

Lilli and Sarah – it’s a little different with them.  I’m the stepmother – so I’ve never really done the nitty-gritty parenting stuff.  Not the doctor’s appointments and school conferences, not the planning of after school activities and nagging them about homework.  What I did do was provide a safe space for them to be themselves.  To play and run and create religions on my porch, and sell homemade perfume, and race tricycles down the hill.  That’s what’s ending.

I still have my Jessie – and fourteen is not eighteen.  While she may be edging ever closer to adulthood, she’s still mine.  But Lilli and Sarah are, for all intents and purposes, grown up now.  Sarah is still in high school, and will still need rides around, and she’ll still come for Shabbat dinner – but the days of playing outside with my kids are over.

I’m not done with childrearing yet.  I’ve still got a ways to go.  But more of it is behind me than in front of me, and I’m wistful and sad.  And proud – because we’ve done a good job so far.  The kids have grown up together, with a sense of belonging and togetherness.  The three Cohen girls are a unit, and I’m incredibly proud of that.

I’m also incredibly glad that I’ve still got a little one who needs me to wash her hair in the tub, a boy child who still calls me “Mama,” and a fourteen year old who might be within walking distance of adulthood, but isn’t there yet.

Lucky died

It was very sudden, and we’re all still in shock.

He got sick on the way home from Hermit Island, and seemed to be getting better the next day.  But by Thursday morning, he was non responsive, and by the time I got to the vet’s office, he had slipped into a coma.

We’re all so sad.  I know I miss him, so much.  All the time.  Everywhere I look, I see reminders.  My day revolved around giving him his meds and walking him, and I’m perpetually having to tell myself that he’s really gone.

The kids are all handling it.  They’re all sad, and they cry, and then pick themselves up and move on.  Sam, in particular, is really struggling.  He’s not sleeping at night anymore – because that’s when he misses Lucky the most.  So he stays awake, later and later, and then finally falls asleep when he can’t stand it anymore.  Today, he slept almost all day, just to try and catch up – so he’ll be up again all night.  I feel almost powerless to fix it – because I know that it’s that he just misses his dog so much, and facing that empty bed every night is more than he can bear.

I’m looking for another dog.  I was thinking that I’d like to wait until after Jessie goes to camp at the end of the month, because it’s going to be all sorts of crazy trying to get her in and out of Cambridge every day, and I didn’t want to try to add getting a new dog acclimated to us at the same time.  But I’m almost thinking that the sooner the better – if for no other reason than I’d like my son to sleep at night.

 

I’m either wicked good at this or a miserable failure

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.

 

 

Happy birthday to my Sammy

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.

No Daddy Makes for a Sad Girl

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 :-)

Pep talk

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.

Ugh

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.