The Same but Different

“Mom, tell me about your mother,” my seven-year-old son Edgar asked as he studiously manipulated the latest acquisition to his Beyblade collection.

We were in the car, my eyes on the road, his on his toy when he posed not for the first time questions about my mother.

I hesitate telling my children too much, but I certainly need to tell them enough—not only to honor their earnest inquiries but also to ensure that the woman who raised me does not take on mythic status due to my reticence.

“What would you like to know?” I asked him.

“Well, tell me what was wrong with her brain.”

He knows that my mother had significant mental health issues, which, for his seven-year-old benefit we have always described in terms of her brain not being healthy and not allowing her to make the best decisions.

I then thought about the verbiage we have been using, terms we came up with well before Edgar was diagnosed with epilepsy or ADHD—conditions he understands to be the result of his brain working in a different capacity compared to others’—and I could see the connections he was making and where this conversation was going.

And I was terrified.

He said, “Mom, you didn’t really love your mother, did you?”

I told him my feelings for her were and are very, very complicated.

He surmised that since she hurt me it would make sense if I didn’t love her. Then he added, “But you know, Mom, I think I understand her . . . why she made bad decisions. Her brain didn’t help her—just like mine sometimes doesn’t.”

I reflected on his magnanimity, the depth of his understanding and empathy; but at the root of it I also understood his fear—that my love for my beautiful son may be compromised if one day his brain causes him to make a decision that hurts me.

I explained about unconditional love, the love a parent has for a child, the love I have for him.

And that’s truly where I thought this chapter would end . . . a picture-perfect moment where I express and my son understands the depth of what I feel for him, a neat conclusion tied up with a bow.

But it didn’t end here–and there was most assuredly no bow.

He pursued and in rapid-fire succession asked if she had epilepsy. I told him she didn’t. He asked if she had ADHD. I said no. He then asked what she did have, and I told him. He asked me if she were born that way, how old she was when people realized her brain was not healthy.

He asked whether the same diagnosis was coming for him.

And before I could answer—as if I could answer—he mercifully asked, “Mom, what was her name again?”

I said, “Diane.”

He said, “That’s a pretty name. Maybe it’s not to you, but it is to me. I think it’s nice.”

I stared straight ahead at the road in front of me and realized that my past may be behind me—but it’s also on the side of me, above me, below me, and in front of me. And clearly it’s in my son’s heart and on his mind.

He doesn’t realize that her story will not be his story, and he fears it—this sweet soul who carries burdens in body and mind disproportionate to his years.

I can’t change my past nor can I predict my son’s future. All I can do is negotiate the present and hope that there are enough hugs, enough declarations of love to make up for the rest.

The Fear of a Seven-Year-Old

He has been talking about being afraid to die.

And though most people–children included–from time to time internalize, reflect on, and occasionally articulate this all-too-real fear, Edgar is just seven. And when he couples the expression of this fear with a sense that his seizures will return, what is usually a fleeting fear for most people takes on an added dimension. In a seven-year-old.

In Edgar’s mind he has linked his epilepsy with dying. And though this connection has never been actively expressed in our house–since he is just seven–he is not incorrect. It’s a fear we live with every single day. And apparently, though we have tried to shield him, so does our son–who is just seven.

There are many things we can and do say in response, but the fear becomes all too palpable and marches right to the front of the line when he invokes his seizures. His seizures have stayed at bay for sixteen months; and Edgar has done a remarkable job at convincing himself he is in charge of them. He has utilized the martial imagery our society uses when we encounter conditions that compromise our health; he has fought and battled and is prepared to do so every day. At age seven.

But in truth, though Edgar’s attitude toward his condition plays a significant, even vital, role, it’s not the only factor.

It is very hard to reconcile, as a parent, that this beautiful smile masks fears that should be no part of a seven-year-old’s day. But it does, as do ours.

Every day.

He Will Be Ready

Last night, my seven-year-old son Edgar ardently declared his love for me and dreamily whispered as he grasped his pillow and drifted off to sleep, “Mom and I can never be separated.”

A tall order . . . but one that grazes my heart nonetheless–not because I have a need for this level of extreme adoration but because I earnestly worry what life will look like for my son when eventually we are separated.

I understand my charge as a parent–to love my children, of course, but as important to arm them with the tools they will need to become successful, independent adults.  It’s simple, really.  But when your child has a condition (or two) that impacts his life, his functioning, you worry–you worry how anyone will ever be able to care for your child with the same dedication, the same attention to detail.  And that worry can easily turn to unrealistic expectations.

Parents often think about what their children’s future partners might be like–their future sons- and daughters-in-law.  But when your son has epilepsy or ADHD, that imagining goes to a whole other place:  Will Edgar’s seizures scare others away?   Will this person make sure he takes his medicine if Edgar can’t or won’t?  Will he or she ever be able to love him the way I love him?  And then . . . what if Edgar chooses to live his life without a partner?  Or, worse, what if he wants one and there isn’t one?

When my son whispers that he and I can never be separated, he is echoing what I at times feel in my own heart, in my soul–because I know as long as he is with me, he is safe; he is loved; he has someone he knows will always and forever be in his corner and on his side.

But my head knows better and understands eventually I have to let him go–not today, but eventually.  And I’ll have to explain to him that it will be okay, that it will be mutual and that he’ll be ready.  We have work to do–and all that work is so that we can eventually separate, so that one night as he drifts off to sleep he can utter, “I am ready.”

Word Power

It’s just one page in a magazine of 118.

Just one word in article of roughly 250 others.

But as the mother of a child with epilepsy, it caught my attention.

Of course it did–because of my son and because of the constant battle fighting the stigma that epilepsy garners is.

“Kelly Osbourne: Shocking Health Scare” (People, 25 March 2013) is swathed in purple, the signature color of epilepsy awareness–from the celebrity’s hair color, to the highlight of her name, to the enlarged first letter of the article, to the pull quote from a physician and director of the Epilepsy Center at the University of Cincinnati.

At first glance, the article appears to be the product of thought, even sensitivity.

And then . . .

“Ultimately doctors concluded that the incident was likely a onetime freak episode, and Osbourne was discharged after five days with a clean bill of health.”

Freak.

And here we go again . . .

Of course, we understand the author’s intent.  And of course we know what it meant by the expression “freak episode.”  It’s not the denotation I am questioning but rather the connotation.

Every word has a denotation–its dictionary definition.  But most also have at least one connotation–an underlying meaning where prejudice and bias reside.  If you are responsible with your finances, would you rather be called economical or miserly?  If your personality stands out from the crowd, would you opt for the label unique or bizarre?  Would you rather your employer call your dress-down Friday look casual or sloppy?  If you are at a certain age, would you prefer the adjective mature or old?

You might not prefer either; but if you were forced to choose, you’d probably opt for the first.

Epilepsy is steeped in a history that includes seeing those contending with the condition as “freaks”–as possessed by spirits, the devil even.  The word–no matter its contemporary denotation–has no business in an article about epilepsy.  Period.

So, with all due respect to the editors of People magazine who may have degrees more advanced than mine or a command of the language I have not yet mastered, may I humbly suggest the following edit:  Delete “freak.”  And if your own common sense did not lead you to that conclusion, how about consulting the medical expert to which you clearly had access?  I’m sure he could tell you the extreme trial walking the planet with epilepsy is and how you–one of the premier purveyors of popular culture–do no one any favors by including such a thoughtless word choice.

Words have meaning and they also have power.  My son–and everyone for whom epilepsy is a daily battle–would thank you to use that power if not for good than at least appropriately.

It’s the least you can do.

Say It to His Face

What do you do when someone is having a seizure in the bathtub?

Hold on to your hat now . . . This just might be the funniest punchline ever . . .

Throw in a load of laundry.

Twitter was alive with the sound of stigma at the recent news of Kelly Osbourne’s possible diagnosis of epilepsy.  And as part of the unedited response to this announcement, the above (fill in the blank) was retweeted seventy-seven times in a single day.

That one person thought this was worth posting is disturbing enough, but seventy-seven?

So, I pose to the seventy-seven:

Would you be able to look into my son’s eyes, into my eyes and say that out loud?

Are other health conditions also fair game for similar vitriolic commentary–maybe something with which your mother or sister or child or best friend may have to contend?

And to everyone else who understands the horror show this truly is, I must ask:

How do I begin to explain the depths of human pathology to my seven-year-old son who has epilepsy and to his brothers who have watched him have seizure after seizure–including in the bathtub?

How do I hold onto hope for the next generation’s evolving understanding of epilepsy when Twitter, the social media playground of the young, is home to such venom?

And tonight I ask myself:

How do I look my seven-year-old son in the eye and say anything other than “I am so sorry”?

“That’s What I Have!”

This 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.

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.

Edgar 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

Your 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.

Does He Still Have It?

Today marks the one-year anniversary of our son Edgar’s last seizure; therefore tomorrow is the one-year anniversary of his being seizure-free.

Cause for celebration?  Absolutely.  Cause for concern?  Always.

To coincide with this milestone, Edgar’s medication regimen is on the descent.  Where he was on five separate medications for his epilepsy last year at this time, he is now only on one–and a reduced dose at that.  The goal is that as long as he remains seizure-free, by this time next year he should also be medication-free.

More on that in roughly 365 days.

For now, the question on my mind is the one that others have asked me and that I have thought long and hard about how to best answer:

If the seizures have stopped, does Edgar still have epilepsy?

The short answer to that is yes.  He is still under a neurologist’s care and guidance; therefore his neurological condition persists.  It will be his doctor who ultimately makes the official call when and if we arrive at that point.

As Edgar’s mother, my answer is a bit more convoluted and not remotely rooted in science.

It is my contention that as long as he takes medicine, he has epilepsy.  As long as I wake up every morning and go to bed every night thinking about whether or not he will have a seizure, he has epilepsy.  As long as every time I hear the wail of an ambulance siren and Edgar is not with me and my heart stops as I wait for my phone to ring, he has epilepsy. As long as every time the front office buzzes my classroom in the middle of the day and I assume it must be a message about my son, he has epilepsy.

And yet none of this is about me.

It is all about Edgar.  And when he is ready, willing, and able, I have no doubt he will weigh in on this–how he sees his condition, if he sees a condition; what worries him and what doesn’t.

Today he has epilepsy, and he’ll have it tomorrow, too.  But he hasn’t had a seizure in a year.

No one around here is exhaling just yet, least of all my son.  But we’re celebrating and vociferously marking this milestone.

He may still have epilepsy, but he also has this moment.

And really, if you think about it, this moment is all any of us have.

Answering His Own Question

“It’s almost your big day,” we told him.

Edgar looked up and replied, “My birthday?”

“No, not your birthday.  That’s this summer.  Your one-year anniversary being seizure-free!  January 28th!”

And instead of a celebratory beam or an exuberant dance in response to this news, Edgar looked worried and earnestly entreated, “What if I can’t do it?”

What if he can’t do it?

Our quick response was a chirpy and upbeat, “Well, we would just start counting again.”

And of course we would.

But his question speaks to how he sees his seizure-control–as an accomplishment, something at which he is working.  Probably not unlike the way his neurologist sees this journey, that a seven-year-old can view it the same way without any prompting from us took our collective breath away.  For us, Edgar’s being seizure-free for almost a year now is equal parts excellent medical care peppered with good luck, the belief that he will be seizure-free, and all the love in the world.  We have never presented this to him as something that required his attention, his hard work.  Just as he had no responsibility in his seizures’ arrival, we never saw him as needing to have any responsibility in their disappearance.

Yet that’s how he sees it.  And of course he is right.  Just like any other condition, the patient’s attitude and effort play a significant role–even a seven-year-old patient’s.

Edgar is not leaving this one to chance.  He is putting in the requisite effort.  He is doing his part.

And all the while he is teaching us what we need to know–about himself, about epilepsy, about being a fighter.

What if he can’t do it? 

If this represents the strength of his instincts, his ability to persevere at seven, well . . . something tells me there is nothing he can’t do.