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.

I think we’re good

Had our appointment with the neurologist this afternoon.  It was lovely, because…. we didn’t really need to go.  She answered some questions, we had a lovely chat, but really, I think we’re good.  We had an appointment on Monday with our neuro-opthamologist, and we’ve got another follow up in a month.  After that – our next follow up will be FOUR MONTHS LATER.  The swelling in his optic nerve for the left eye is close enough to normal to count as such, and the nerve in his right eye is substantially diminished as well.  Not as much as the left, but definitely better.

The surgery worked.  There was bilateral improvement, and while it looks like there is some amount of permanent damage, it won’t get any worse.  His vision is definitely a lot worse than it was pre-accident, but the important reality is that he CAN see.  Even if the right eye never improves (and it may well improve), his left eye is 20/40 and incredibly nearsighted, but he can get glasses.  He’ll be able to get his license, read, do pretty much everything he could with two good eyes.  The doctor doesn’t think his right eye will ever improve to the level of his left eye, but we can live with that.

There are still some lingering issues – his taste buds were essentially destroyed by the medication that he was on for the intracranial swelling.  His diet is crap – he literally lives on white rice with ketchup, one type of croutons with italian dressing, and KFC.  Taste buds regenerate, so that WILL improve, it just might take a few months.  His ability to self-regulate temperature is an issue too – he gets hot a lot quicker now, and is spending most of his time in his underwear (flashbacks to toddler Sam), but the doctor swears that’ll improve too.  Maybe not until the fall, but it’ll improve.

Emotionally, he’s improving every single day.  Literally, every day is better.  He’s happier, more willing to go out and do things.  He’s not in pain, and that’s made an enormous difference.  He rarely, if ever, complains of a headache, and he’s on a new med for acid reduction that’s really helped his stomach issues.

I feel like I’m coming back to myself now.  Like my son is emerging from this hell that he was lost in for months and months, and I’m getting my buddy back.  We’ve still got a ways to go, I need to get his diet under control, I’ll have to watch his weight pretty closely to make sure that he stays on an even keel.  There’s still the whole issue of his education to consider – but school in September isn’t totally off the table now.  I could see him improving to the point where he could handle it, physically and emotionally.  I’m not counting on it – but I’m not taking it off the table either.

This last school year has been hellishly-hard, in so many ways.  And Sam’s been through more than I ever imagined he’d have to face, but we’re still here.  He’ll continue to heal, to get better, to grow and change and be the person he’s meant to be.  We’ve all learned a lot this year, about community and faith.  I’ve cried all over an enormous number of doctors between here and Boston.  I’ve been stunned by the empathy and kindness of family and friends, by strangers, and people who knew us a little – the number of people who reached out, who were here for us when we were so lost and scared.  Every bit of it helped, every phone call or email or delivered meal or kind word made a difference for us.  I’m so grateful, for everything.

Oh My God – I’m exhausted

I went on Julianna’s field trip today – and a trip to the zoo with five six year olds WORE ME OUT.  If there’s any thought that maybe I could have another baby… please remind me of this.  My feet hurt, I’m irritable and begging my kids to please, please, please just stop squabbling for a few minutes and let Mama read in peace.

(note – they don’t.)

I wanted to do a blog post on Sam’s prognosis, but I’m just too tired.  I can’t believe it’s only 6:30 – and it’s too damn bright out for me to try and convince Julianna that it’s bedtime.

He still cleans the vomit

Marc and I have always had a division of labor.   I’m proud to call myself a feminist, but also well aware that I tend towards a very traditional definition of femininity and motherhood.  Marc kills the bugs, handles the trash and yes, cleans the puke.  When the kids were little, it was a little more evenly balanced.  I was usually holding the sick kid, so I’d aim them at me, trying to keep the mess off the bed (it’s a lot easier to switch out my t-shirt than it is to clean all the bedding).  Then I’d launch into soothing and calming down the sick kid, while he handled the clean-up.  But the kids grew up.  They puke in the toilet, mostly, now.  A bucket when they’re really sick.  And sometimes, they don’t make it to the bathroom and throw up all over the kitchen.

Tonight (or this morning) was one of those occasions.  And just for variety – instead of Sammy puking, it was Julianna.  She’s been complaining of her stomach hurting off and on over the past few weeks.  I assumed it was more about her brother having stomach problems, and a unconscious desire to get a little attention.  She was fine yesterday, maybe a little fussy.  We went out to dinner last night for Marc’s birthday and she ate well.  Fell asleep easily enough.  But she was crawling into my bed at 4:30 this morning, complaining of a nightmare.  She started talking about her stomach hurting soon afterwards, and by 5:30, she was running for the bathroom and didn’t make it.

And following along with our pattern, I was up with Julie, holding her hair back and rubbing her back.  I tucked her into the couch, and sat next to her while my poor husband got up and mopped the floor and chased the dog away from trying to “help” with clean-up.  While it used to be more equitable, it’s now totally on him, and I’ve got the easy part.

In other news… Jessie’s off for her end-of-the-year field trip at a mini-golf and ice cream place.  We’re in a flurry of the June activities for her – waiting to find out if she got in at the summer camp, finishing up all of her end of year projects.  She’s in 8th grade next year.  And that’s so over-the-top crazy that I can’t quite grasp it.  How is it that I’m old enough to have an 8th grader?  Sam is really doing well – still only eating three things, but just the fact that he’s eating is huge.  He’s on a new anti-acid med too, and that seems to help a lot.   We’re still trying to get a handle on the vision thing – how much more are his eyes going to improve?  What does it mean if they don’t?   Because he’s feeling better, the fact that he has trouble seeing is more of an issue.  He spends far too much time starting at that little kindle screen, but we’re making progress.  Slow, slow progress.  He hates leaving the house, and hates going places.  How much of that is the anxiety, how much of that is that he has trouble seeing, and how much of it is that he’s always hated going shopping or running errands, or going to family parties – I don’t know.  I don’t know how hard to push, when to give him space and when to force it.  There’s this line somewhere, and I don’t ever really know if I’m erring on the side of asking too much of him or not enough.

Happy Birthday to my love

I used to worry sometimes.  Not worry.  I used to notice that I had a very peaceful life.  No real strife, or drama.  My kids were healthy and growing – they might have fought or squabbled or sobbed, but that’s normal.  My marriage was peaceful, with a man that I loved.  We never had a lot of money, and our house was always sort of a disaster, but life was easy.

The past nine months haven’t been easy.  The past six months have been hell.

I’m still afraid to count on it, like at any moment, something new and horrible is going to happen.  The reality is that Sam is getting better.  He’s not all the way there yet, and we’re going to be dealing with the ramifications of the vision loss for a long time.  But he can eat (white rice with ketchup, croutons and salad dressing, and KFC), and just that, having solid food in his system had made such a difference for him.  He’s happier, he’s hugging us spontaneously.  He’s getting better.

It’s true – you know who your true friends are when things are hard.  Even more true, is that you learn how strong your marriage is when everything is falling apart.  It’s not that I love him more now, it’s not that I trust him more.  It’s that I’m so grateful to have had him at my side.  I’m so grateful that my children have him, that he snuggled and cared for our girls when I was taking care of our boy.

I know that he shares my fears and my hopes.  My worries over whether or not the vision will come back, or what it’ll mean for him to not ever regain it.   He’s my partner, my other half.

Today, I celebrate my husband, my buddy, my love.  The best and brightest part of my life, the reason that I know that we’ll get thru the worst that life can throw our way.  Happy birthday Marc – I couldn’t have made it thru the last six months without you.

Ode to Lucky

This goofy little dog.  Looking back, getting an epileptic, non-housebroken dog three days after Sam had the biking accident seems like it would have been a mistake.  But in reality, it was the best decision.  Lucky Charms is simply the perfect dog for our family.

He’s the right size, small but still looks like a dog to me.  I’m not a dog snob, but I really love german shepards, or labs or retreivers.  Those are the dogs I grew up with, and that’s what I wanted.  But our little apartment barely has enough space for us.  Lucky looks like a miniature dog.  He’s small enough for me to pick up easily.

He’s calm, never barks, has never shown any sign of aggression.  Julianna was terrified of getting a dog, and still isn’t very fond of anyone else’s dog.  But she loves this one.  Jessie was already primed to like him.  Even Marc, who isn’t really a pet sort of person, is reluctantly coming around.  It’s impossible not to love Lucky.  He’s peaceful, laid back, happy to go with us, happy to stay home curled up and sleeping.  He loves going for a walk, loves going to pick the kids up at school, and best of all, his default position is curled up next to Samilicious Boy.

I’m not saying that housebreaking this dog has been easy, but I think we’re making some progress.  Slow, slow progress.  If I’m at home, and paying attention, then he will happily go outside.  But he makes no sign that he has to go, so it’s really a matter of paying really close attention, taking him out on a schedule (that gets thrown to hell often enough with doctor’s appointments, etc), and copious amounts of praise and treats.  He’s trained to go on a puppy pad, fortunately, so it could be worse.

The epilepsy seems to be mostly under control.  I have a pill organizer for Sam as well as for Lucky.  He takes one pill in the morning and at dinner, another one in the morning, mid-afternoon, and before bed.  It seems to be working – we’ve changed the regiment around, adjusted and added different doses, but he hasn’t had a seizure in weeks.  Best of all, having Lucky makes Sam’s life better.  The quickest way to get him to talk to a doctor or nurse was to start talking about his dog.

 

To the other people in the elevator

I wasn’t abusing my son.  I know it looked like I was.  He was obviously miserable and in considerable discomfort, and I did, in fact, have my arms wrapped around him and was dragging him out of the car.  I did, in fact, use my leg to knee him in the butt to get him into the elevator.

It felt like I was abusing him,  honestly.  At least, part of me felt like I was.  That’s the part of me that’s just all emotion – knee jerk, straight up, no thought maternal ooze-ing part.  The part that just wants my kid happy.  Safe, secure, and not afraid.

That part of me has taken a beating lately.  Because all of this, the stomach problems all thru the fall, the crippling anxiety of the winter, and then the accident.  The pseudo tumor, the vision loss, the pain.  That part of me had to be silenced, as much as I could.  I had to ignore that part, so that I could hold him down for shots and blood work.  That part was dying inside, that part of me was horrified on every single layer.  When I had to wrap my arms and legs around him and hoist myself up onto the gurney for transport.  When I had to hold him, kicking and screaming, and begging me to please stop, to please take him home, to please just take him home.

That part of me is still there, and still crying.  Every time he’s scared, or belligerent, because I know that’s just anger masking the overwhelming fear.  That part of me that aches for my little boy.

But there’s another part of me.  The part that knows that the doctor knows more than he does, and when Sam insists that he’s fine, he really isn’t.  The part that knows that the anesthesia he dreads will be a godsend so that he won’t fight the rest of what’s going to happen.   The mom who forces her child to do what he dreads most, the one that drags him out of bed, kicking and screaming, dresses him against his will and forces him into the car.  The one who calls the doctors, again and again, begging for answers and treatments and relief.

So I know I looked like the worst mom in the world today.  Believe me, I thought I was too.  Because it doesn’t feel right to make your child suffer – but I know that Sam doesn’t need to feel better right now, he needs to be BE better.  He needs to be able to see, to be able to run around, and feel confident and safe and secure.  And it’s only by doing this – by forcing him to do what he hates, by going to the doctor, by yelling at him until he takes his meds, by forcing him to drink, to try the food, to just keep going – even when everything about him wants to give up.  I tell him that I’ll be strong for him, he doesn’t need to know that he’ll be okay.  I’ll know for him, I’ll do it.

I can be the horrible mom, because I know that it’s only by being the horrible mom, the one who drags kids into elevators when they’re kicking and begging to go home – that’s the only way that the other part wins.

He ate salad

Sam’s eating again.  Not a lot, and the list of food he can’t tolerate is significantly longer than the list of food that he can.  He can eat peeled apples, salad (lettuce, cucumbers, croutons and salad dressing), and white rice.  French fries.  He can drink ginger ale and water.

And that’s such a stunningly huge improvement over where we are – I know that.  But still – salad and rice and apples is not a sufficient amount of food to grow a nine year old boy.

Appointments continue – feeding clinic and neuro-opthamology tomorrow, and regular pediatrician on Friday, therapist next Tuesday and physical therapy the week after that.  It’s progress – huge, unbelievable progress, but it still feels like such a long, long road to get back to normalcy.

In other news… we’re counting down to the end of the school year for the girls (which just reminds me of how much I need to be able to focus on educating Sammy).  Julie’s kindergarten teacher is moving up to first grade, which means that we get to have another year with her.  Jessie is heading into 8th grade – and can we just take a minute and think about that?  8th grade.

Both girls seem to be doing well.  Jessie’s grades are fabulous (except for math, but that was crappy before the accident).  Julianna is reading and writing and thinking all the time – she’s a little sponge and just soaks up everything, all the time.

Fifteen more school days, and then we’ll be in summer.  I can’t decide if I’m looking forward to it or dreading it.  I love summer vacation, more time with my kids is always a plus… but, let’s be honest, my kids don’t like each other much these days.  Sam is so short tempered and impatient, and Julie and Jessie are convinced that the other one hates her.  But we’ll be able to do stuff – or we could if we weren’t so completely screwed financially.   Okay – this isn’t helping.