Late last year someone shared this post on Facebook.
And it was like someone punched me in the throat each time I read (and re-read) it.
See, this year I am the parent of “that kid”. Who has teachers who are as loving and compassionate as the writer of the piece clearly is too.
And though I’m always, eternally conscious of the struggles we are experiencing, seeing it in writing – from the perspective of a total stranger – reached me in a totally new and very powerful way:
“I can’t tell you that his asthma medication makes him agitated.”
(“Asthma medication” most likely meaning prednisone. “Agitated” most likely meaning violent).
And other things too:
“I can’t tell you that I meet with his parents EVERY week, and that both of them usually cry at those meetings.”
“I can’t tell you that I have been meticulously tracking her aggressive incidents for 3 months, and that she has dropped from 5 incidents a day, to 5 incidents a week.”
“I can’t tell you that the school secretary has agreed that I can send him to the office to “help” when I can tell he needs a change of scenery.”
When you come across something that so completely taps into what you yourself are experiencing at that very moment, it is both devastating and enlightening at the same time.
And yet it has taken me many months to share it. It felt too raw, too painful, to put out there. And so I waited, assuming the “right time” would come – and here it is.
We have seen astounding improvement in Noah – in every way imaginable. And we have no reason to believe that it will not continue. And yet we cannot seem to crack the code that will keep him from having violent outbursts at school. Is it the prednisone (even though he is on a drastically reduced dosage, and we continue to wean him off it entirely)? Is it now simply his “go-to” behavior, brought on by the prednisone? Is it a chemical imbalance from having multiple seizures last year? Is it a psychological disorder? We have a formal neuro-psych evaluation scheduled soon, that will hopefully provide answers to these difficult questions.
Of course, we are utterly consumed with this, and worried that he will not be able to stay in a regular school setting. That he will never have any friends. That he will never be “normal”. That our friendly, funny, happy, sunny boy will be overwhelmed by the darker behaviors, until that is all that remains. That he will be isolated, restrained, angry and left behind. Left out. Left alone.
I go to school events and birthday parties (when we’re invited), wondering what the other parents have been told by their kids – what they’ve heard on the playground – what they must think of us as parents. Because of course none of them know about Noah’s condition. Because, as the writer points out, “I can’t share personal or family information.”
Even though we’ve made it clear that we have no problem with anyone knowing about Noah’s epilepsy. But we get it.
So I’m sharing it here – for all of the parents in Noah’s school – and for all of the parents who are doing their best to support their child – “that kid” – through a horrendous time. A time made all the more stressful when it is being played out in such an open and public arena as school.
These are the things I wish you knew:
I wish you knew that if Noah laid a finger on your child, we make him write – and hand deliver – an apology note the next day.
I wish you knew that we have Noah signed up for nine – yes, nine – different activities over the course of the week, to teach him social and physical skills that he missed out on over the 3 years that his epilepsy went undiagnosed. Because we know he’s going to “get there”, and we want him to be well-equipped and ready when he does.
I wish you knew that every day I get a phone call – at my request – from Noah’s teacher, to give me a recap of his day (for better or worse), so that we can celebrate the achievements, and – more importantly – address any outbursts with the appropriate consequences. So at around 2:15 each day I go into a sort of paralysis – staring at the phone and simply waiting for it to buzz. I can’t write, work, eat or do anything other than wait – with a knot in my stomach and a lump in my throat.
I wish you knew how hard it was to see this little boy bound onto the bus each day, promising to “be a good boy, Mommy” – knowing that so much of his behavior is beyond his ability to manage at this point. My heart breaks over this.
I wish you knew how much – how very, very much – it means to us when you call or write and ask about Noah/insist on a play date/make me go out for lunchdinnerdrinks to talk about things. Mike and I feel utterly isolated so much of the time, and your outreach (in the midst of your own busy lives) is truly priceless.
If Noah’s classmate is your first or only child, I wish you knew that parenting is a marathon – not a sprint – and before you cast aspersions, please please know that you: a) never have the whole story – regardless of what you “think” you may know, and b) you have a long way to go before you can even think about saying “job well done”. And that if and when your child does trip up and fail, it will be no more a reflection on you as a “bad parent”, as his successes and achievements brand you as a “good one”. We are ALL doing the best we can and I live for the day when we parents are all just a bit kinder to one another, knowing that truth.
I wish you knew that we work tirelessly with Noah’s neurologist, making sure that we are not missing/overlooking/neglecting anything that might clue us in to changes we could be making, medication we could be adjusting, testing we could be pursuing.
I wish you knew that Noah has a brother and sister – who, though all grown up and mostly out in the world – adore their little guy, and are as doting on and concerned about him as we are.
I wish you knew how far – how breathtakingly far – Noah has come since his epilepsy diagnosis. In ways that would be so meaningless – so minute – so take-it-for-granted-ordinary – to you, that you wouldn’t even give them a passing glance. Things that he wasn’t doing at all JUST A YEAR AGO:
Standing – still – in a line. Patiently waiting his turn.
Playing a board game/building with Legos/coloring.
Watching a soccer coach assign a drill – and not only paying attention, but actually following through exactly as instructed. Every single week.
Hitting a tee ball or tennis ball. Ice skating. Skateboarding. Swimming. Bouncing a ball. Catching a ball. Dribbling a ball.
Writing his letters.
Drawing a figure.
Sleeping through the night.
On Monday mornings, when you “complain” about the weekend you spent ferrying to endless baseball/soccer/lacrosse practices and games, I wish you knew how envious I was. How I only want to have a “normal” weekend spent doing those things – and that we are working toward having those exact kinds of weekends ourselves, someday soon.
We are fervently committed to the idea that all of the wonderful qualities that comprise our son will be the ones that remain when we are on the other side of this. That the things that make people fall in love with Noah on sight are the true essence of him, and will be there in the end.
Till then, at least now you know.
Click here for more info on ESES.
And here, for my other posts on our journey with epilepsy:
And thanks – so much. xo