In the Presence of Greatness

I am ordering a 5 x 7 print of this photo as I write, and later today I will embark on a quest for a frame worthy.

And this photograph will sit on my desk now and forever–and not because we’re wearing dry-clean-only attire but because we are standing next to true modern-day heroes, a couple who inspires me in ways my weak words will never be able to fully articulate.

When I need an ear, Richard and Deb Siravo are there.

When I need to be brought back down to earth, they help me along.

When I am angry (and, yes, sometimes I am), they have the rare gift of being supportive yet simultaneously calming.

They have taken tragedy and turned it into healing–and not just for themselves but for all.

They don’t complain; they celebrate.

They teach what they know and what the rest of the world so desperately needs to know.

And they remind me who I need to be as we navigate these waters.

Our son’s epilepsy is a journey, and these are our guides.

And I know we are in good hands.


Food for the Soul

He may stand at a mere 36 inches and have been on the planet for just two-and-a-half years, but tonight August showed a capacity for empathy that belies his small stature and decided youth.

Surrounded by several EMTs and cradled in my arms, Edgar was working hard to recover from a grand mal seizure.  August stood and watched and asked questions.  He knew Edgar wasn’t feeling well.  He looked perplexed.

He exited and headed to the kitchen, picked up the detritus that was his pancake, and marched back to Edgar.

He broke off a piece and placed it gently in Edgar’s mouth.  The EMT joked that August should check to make sure all his fingers were still there.

But August just smiled.

He was proud that he had fed his brother, that he made his brother happy.

And if you think he was proud and happy, well, just imagine how I felt.

Well done, August.  Well done.

No Joke

As of this writing, at least 115 people “like” this on Facebook.

Another 106 thought it clever enough to “share” on their walls.

Adjectives used to describe this purported witticism include “cute,” “hilarious,” “hysterical,” and “cool.”

And, apparently, it made some people “LOL.”

And at the risk of calling even more attention to it, I present it to you.

But, rest assured, I won’t be dignifying it.

Is it a piece of drivel?  Yes.

Is it cute, hilarious, hysterical, or cool?  Of course not.

Is it worth the time I’m going to take to write about it?  More than I can possibly articulate.

As the mother of three children by adoption, I am understandably interested in how adoption is portrayed in the media and in popular culture.  I have to be.  Nothing less than my children’s self-worth is at stake.

In our family, we celebrate adoption.  It is seen as a miracle.  The idea of ever using adoption as a way to insult another human being doesn’t even enter our collective consciousness.

Historically, however, adoption has been used as a gag, as the butt of a joke, as a way to torture a sibling or explain why someone is different from the rest of his or her family.

But why?

Why would someone be driven to tears upon learning he or she was adopted?  Worse, why would someone think, of all the available insults in the arsenal that is the English language, that telling someone they’re adopted is how they’re really going to get under someone’s skin?

The idea behind it, I think, has to do with inverting a person’s concept of who they are, who they believe they are.  But this interpretation requires analysis–and effort; and, sadly, a quick picture on Facebook that elicits 100-plus comments over a day or two isn’t inviting any kind of deep thought.  The surface message, the one that proliferates and sticks, is that there is something wrong with adoption and something powerful in the insult of telling a person they were.

As long as these messages persist and the people with whom my sons will come in contact every day feel compelled to comment and share, we have work to do.

And that, like the picture you see here, is no joke.

He Knows

I asked him how he was feeling as I held him last night.

I asked him how he was feeling about his epilepsy, about the seizures, about the medicine.

And he said, “It’s hard, Mommy.”

I told him I would be there for him, that I would never leave his side.  Ever.

And he said softly, “I know.”

And the fact that he knows gave me the strength I needed to fight along his side for another day.

He’s My Brother

He knows the meaning of and can pronounce “idiopathic.”  He can differentiate between a grand mal and an absence seizure and delineate the characteristics of each.  And he will be the first one to tell you exactly what epilepsy is (“a little problem with the electricity in your brain”) and is not (“a sickness”).

He’s seven years old and quite possibly the best big brother on the planet.

Yesterday he discovered his brother having a seizure, knew exactly what he had to do, and explained to the five-year-old onlookers why they should not be laughing.  This morning he perceived an aura before either one of his parents–though we were all in the room together–and warned us of what he was sure was an impending seizure.  (It was.)

Tonight he asked if his brother would ever be able to get his driver’s license and assured me that should Edgar not be able to drive, he would take him where he needed to go.

He told me he worries and that he’ll always look out for him.

And I looked into those big brown eyes and wondered who he is, how we got so lucky, and is this too much.

So I asked him.  “Oscar, do you ever feel as though this is too much?”

And his reply?

“It’s not ‘too much.’  It’s life.  And it’s going to be okay.”

And I believe him.  Because it’s him.

Dear Epilepsy

Dear Epilepsy,

This letter may be long overdue.  Perhaps I should have penned it twelve weeks ago when you first paid a visit to my sweet, gentle blue-eyed boy.  But I wouldn’t have known what to say 12 weeks ago.  You caught me off-guard.  Three months later, I still feel as though I am at a loss, but there are nonetheless a few things I’d like to say.

According to my son’s neurologist, she’s having a difficult time catching you.  She called you “elusive” and said that you’re progressing.  I am not entirely sure why you need to be, to do either, why you continue to wreak havoc with my son’s tiny body, why you have even come in the first place.

Because of you, a six-year-old boy has to take medicine, a lot of medicine, every day–and it seems as though it’s more and more all the time.  His hair is thinning because of it, because of you.

You have visited many–Edgar is surely not your first and won’t be your last.  And while I have tried to be patient, tried to be understanding, I am not happy with you.

This morning–despite all the valiant attempts by very intelligent, very competent experts to keep the seizures away–you stopped us all in our tracks once again. 

Every time our son has  a seizure he is at risk–not just for his physical safety at the moment but in terms of the health of his brain.  And, you know, he only gets one brain.  I want to protect it, to keep it safe.

But you’re not letting me.  You fight me.  You fight him.  Every time we make a move, you make a counter-move.  And for the moment, it appears you’re winning.

However, at the risk of incurring your wrath even more than we have thus far, I will tell you that we will fight–tirelessly, undauntedly, and until we win.  Because you, epilepsy, will not define our son.  He may have to keep company with you for the time being–or for the rest of his life–but that is all. 

THAT is all.



Silencing the Critics

An article in the most recent issue of Parents magazine caught my attention.  And, no, it’s not because of its title: “The Naked Truth.”  Actually, it was more for its subtitle: “Now that I’m a mom, I’ve got nothing to hide.” 

Through the years, a number of articles in Parents have “caught my attention,” but none has inspired me to write.  Truth be told, Parents, as a publication, doesn’t lean particularly close to controversy.  At its best it’s informative; mostly it’s pleasant, easy reading.

“The Naked Truth” by Rebekah Hunter Scott delineates the miraculous disappearance of one’s ego when one becomes a parent.  And as a parent whose own ego left the building sometime in August 2004, I find reflections on this topic enjoyable if not affirming. 

Scott writes that her days of “crippling modesty” are over now that she has children.  Any mother who has ever held a squirmy, hungry, tired toddler and has had said toddler pull her shirt all but off in the middle of Dunkin’ Donuts knows of what she speaks.

But there is a passage in her essay that gives me pause–serious pause. 

Scott writes about her young son, “Having a mini critic as my shadow has toughened me up a bit, thickened my skin. Let’s face it, kids are brutally honest. Especially mine. Rollie constantly points out my imperfections. Your bottom is big, Momma. (Time to go jogging.) Why are your feet so cracky? (Must loofah.) Your breath smells yucky. (Anyone have a Tic Tac?) If someone had even hinted at such things pre-kid, I would have been so mortified I would have balled up armadillo-style and rolled into a hole for months. But that’s the beauty of having kids: I am no longer capable of embarrassment.”

While kids do “toughen us up,” are “brutally honest,” and help us to be “no longer capable of embarrassment,” I can’t help but think of a son who “constantly points out [his mother’s] imperfections” and where that leads. 

As the mother of three sons–and three future men–I am rather adamant that unless they have something positive to say about someone’s personal appearance, then they are to say nothing.  And that starts with their mother and father.  

Of course, as young children, they have been unwittingly and occasionally deliberately critical of or curious about another person’s body, face, clothing, or hair.  When that happens, they are reminded of how such comments are unnecessary at best and incredibly hurtful at worst. 

As a woman, too, I find it more than a little disconcerting that a male–“mini” though he is termed–can tell his mother her “bottom is big” and that this sends her flying out the door to go jogging.   We would not tolerate this from adult males.  Why should it be tolerated–or treated lightheartedly–when the criticism comes from a child?

Naturally, this article is meant to be humorous, to entertain, and may not even be meant to be taken literally.  That aside, I think I’ll keep doing what I”m doing. 

When my oldest son lapses into criticism of another person’s appearance, I simply look at him; and his reply to my stare tells me he gets it:  “I know, I know, I’m not supposed to say anything negative, right?”

Quite right.