“That’s What I Have!”

IMG_0911This afternoon my son’s first-grade teacher pulled me aside.  It was obvious there was something important she wanted to share with me.  I joined her in very close proximity and listened carefully to what she said.

In social studies today it came up that someone they were studying had epilepsy.  And without prompting, without a cue, and without missing a beat, Edgar announced–without shame and without fear–“Hey, that’s what I have!”

A simple declaration that for someone with epilepsy is anything but simple.

Edgar is young and may not be completely cognizant of the depth and reach of the stigma that still surrounds epilepsy and the people who live with this condition.  And ten years from now in a similar situation he may not make a similar statement with equal gusto.

But he might . . . because he did today and he was praised for it.

From the moment he was diagnosed, when we have encountered stigma, we have stood up to it, fought against it–vociferously, sometimes in his presence and other times in less overt ways.  I have always known we had to but now I see why.  It is the only hope of bringing out and subsequently banishing judgment and the resulting shame.

Edgar showed his world today there is no shame in having epilepsy.  And maybe his world learned from him.  Tomorrow, though, I suspect he will show the entire world; and something tells me he’s going to be hard to ignore.



dandelion coverI have never been one to try to recreate memories from my childhood with my own children. And to be perfectly fair, this says more about my upbringing and less about my magnanimity as a human being. But that aside, there was always one thing I yearned to share with each of my sons, a book that for me housed many moments of peace and wound up encapsulating—perhaps even helping to create–a personal philosophy and mode of being . . .

Please read more over at The Creative Mama . . . And leave a comment there, if you’d like.  I’d love to know your favorite book growing up and if you ever shared your personal favorite with a child.  What was his/her reaction?

Call Me “Mommy”

IMG_3619If you ask Oscar, he’ll tell you he’s going to be nine this summer.  This is a very big deal, of course, because it’s his last year in single digits.  He’s growing up–and nowhere is that more apparent than in the way he addresses me.  Since he could speak until very recently it was always “Mommy.”  Sometimes more drawn-out than others, depending upon what he needed or wanted, but always “Mommy.”

In the last several months, though, I have become just “Mom.”

Now, of course, no one is ever “just Mom.”  “Mom” is a great moniker, a treasured title.  I’m happy with it.  And I still hear “Mommy”–from Oscar’s two younger brothers; and I’m sure I’ll be hearing it for some time.

But not from Oscar.

I’m guessing daughters are different.  I have heard grown women call their fathers “Daddy” and even their mothers “Mommy.”  But no matter how hard I jiggle my head, I can’t come up with a single instance of a grown man using the same terms for his parents.

And just as I was about to sigh and chalk this up to growth for my son and a memory for me, Oscar got sick this week.  And from the livingroom, where he was all curled up on a cozy chair with his beloved cat, he called out to me . . .


He needed a tissue.

And I got to hold on to my title for another day.

Having It All

IMG_2934“He’s so lucky!”

“I wish that were my problem.”

With all due respect to the people who uttered those comments to me today, my responses are “No, he’s not,” and “No, you don’t.”

This morning I had to bring my seven-year-old son Edgar to the doctor’s office–not for flu-like symptoms, an ear infection, or an ache or pain but because in the last two months he has lost nearly ten percent of his body weight–a familiar side effect for many people taking medication for ADHD.

And while I remain grateful that was ALL we were in the doctor’s office for this morning, this is not an insignificant situation.  A lack of growth is antithetical to childhood–a time when we expect, encourage, even demand growth on all fronts.

That Edgar has experienced successes with the medication he’s been prescribed cannot be minimized or overlooked.  He has been able to do more than he ever has before, been able to engage with others at previously unforeseen levels.  All medications have side effects of one kind or another, so after weighing (no pun intended) the benefits and the costs, perhaps we should have just accepted this as one of the costs for a tremendous benefit.

But watching your already-small child seemingly shrink before your eyes does something to a parent.  Our society champions weight loss, puts those who lose weight on the covers of magazines and proclaims them “success stories,” heroes even; but there is nothing glorious about losing weight because you can’t or won’t eat, and there is not a single thing to celebrate when it’s a child in this situation.

Today we switched medications and designed an incredibly high-calorie regimen for Edgar.  He will get weighed again in April.

Do we want it all–effective ADHD medication with few side effects and a healthy move up the growth chart?  Yes, we do.  Is it possible?  Time will tell.  It’s what we will pursue because it’s what he deserves.

Role Models One at a Time

My aunt sent me a link to this riveting, important confessional essay this morning.  I opened it and read every word–three times–while my son slept upstairs.

In the last year since Edgar’s diagnosis I have been on a quest to find not only descriptions of what it feels like to experience a seizure but also what life for people who have epilepsy looks like–how they cope with the still-rampant stigma, the stigma that lingers despite all the education, despite all the advocacy.

And here was the executive director of a major news organization putting it all out there, including a photograph of her beautiful face in the throes of an EEG.

IMG_3533Edgar has been seizure-free for a little over a year; but as anyone who has epilepsy or is a caregiver to someone with epilepsy knows, seizure-free in this moment does not mean seizure-free in the next.  We live in and appreciate the present but always expect–and not always in the backs of our minds–that another seizure is on the horizon.  It’s just a matter of when.  And for Edgar, mornings have always been a challenge: The transition from sleeping to waking triggered many seizures in his tiny 40-pound body.

And here I was, in those frightening moments I experience every Monday through Friday morning right before I have to wake my son reading an essay that I believe has the power to change the world.

I write about my son’s epilepsy for the same reason Maya Schenwar wrote her piece–to destigmatize this condition, to show what it looks like, in our case, in a little boy, in a family you know or who reminds you of someone you know.  I do this for him because I cannot sit back and simply assume, because he is young, that life will better for him in another decade or two, that people’s thinking will evolve on its own.  Because it won’t.  Not without serious effort.

Yet I do not have epilepsy.  My child does.  So, I can only write what I observe, what I feel, what he communicates, what he chooses to reveal.  I would like to believe that if I had epilepsy I would write about it with equal fervor.  I would like to believe it, but I can’t say for certain.  The same thoughts that float through the minds of others who have epilepsy would probably float through mine:  Will this scare people away?  Will a potential employer not want to hire me?  Will someone equate this with another condition that has nothing to do with epilepsy?  Are people going to look differently at me?  Feel sorry for me?  Not going to want to get in a car with me?

When I woke my son this morning, I carried him downstairs as I still often do as he emerges from his slumber.  When I knew he was cognizant of my words, I lifted his still-drowsy face to mine and said: “Edgar, I just read an article written by a woman who is the director of a big, important publication, and she has epilepsy.  She wrote all about it so people could learn about it.  What do you think about that?”  And he said, “That’s awesome.  I want to do that, too.”

And because Maya Schenwar did so, I now know that my son can and will “do that too.”  He has a role model in Maya Shenwar, and I couldn’t be more grateful.

The Harbinger Atop His Head

IMG_3563Your fingertips would have to know Edgar’s hair like mine do to know what Depakote was doing to it.

Though anyone who knew Edgar pre- and post-epilepsy could see the differences in his hair, knowing he was losing it required another sense altogether.  His newfound curls were distracting if not for their beauty than for the way they all at once seemed to suit his face–a halo effect that does not come along every day.  People would be struck by them, remark on them.

But their comments always felt bittersweet.  Yes, he looks as–or even more–beautiful than ever, but his ethereal curls are a result of the medication he takes for epilepsy, the only medication that has stopped his seizures in their tracks for over a year.   And while we remain enormously grateful for the power of this prescription, this side effect has been a potent, daily reminder of his condition and the mighty chemicals he requires to keep it in check.

If you looked closely, very closely, you would have seen that his once-thick hair was no longer.  And if you caught him just right–when he was playing in the sunlight, for instance–you would have seen the bald patches.  And if you were keeping count, you would have noticed more, not fewer, as the weeks went on.

His neurologist once asked if we felt this side effect was”disfiguring”–the standard one has to reach before remedies are proffered.  And it’s hard to admit to “disfiguring” when all you hear are gushing compliments, see the sweet smiles his face elicits–and even harder when concerns about one’s hair are typically associated with vanity.

In the past few weeks, though, Edgar’s dosage of Depakote has gone down–way down–and already his hair is responding.  It’s still an array of bountiful curls, but it’s thickening.  And my fingertips–if not my eyes–can tell, can see a change on the outside that speaks to an improvement on the inside.

And for someone who is perennially on the lookout for signs that life is better for this small boy who asked for none of this, I am grateful for this one as much as any other.

Gaseous Queries

IMG_3462Edgar has been showing signs lately that his interest in science is growing exponentially.  In the last 48 hours, he has posed the following:

“Dad, where are our books on the solar system?”

“I need that chemistry set!  Where are my goggles?”

“Mom, is this a picture of the cilia inside our noses?”

“What sorts of tools would we need to travel to the Earth’s core?”

“If we change one thing on earth, does it affect everything else on earth?”

And just as I was about to bask in the glow of my beautiful son’s unending curiosity and impressive intellect, he asked:

“Mom, do you think it’s possible to burp the theme song from “Elmo’s World?”

Sigh . . .

We’re getting there–just not today.