Not Really Sick

Last night as Edgar sat perched in his favorite kitchen chair working on his homework, he considered what he had done over his busy weekend.  He colored in boxes for “Went Shopping” and “Played Outside.”  Then he marked the box “Was Sick.”

I asked him why he checked that particular box as there wasn’t a single moment throughout the weekend when Edgar appeared to me to be sick. 

He said, “Well, I had some seizures this weekend, so that means I was sick.”

And I stopped–as I find myself so often doing–in my tracks, struck by the magnitude of what he just uttered.  Edgar knows the words “epilepsy” and “seizure,” and he knows he needs to take medicine twice a day; but never once have any of us termed him “sick.” 

But that’s how he perceives himself–as sick. 

And yet he’s not.  He runs; he plays; he goofs around; he eats; he sleeps; he does his homework.  Sometimes he has seizures, but this doesn’t make him “sick.” 

And I realized at that moment that all the work I plan to do in this arena–to advocate, to educate, to demystify–needs to start with my son. 

Because this is what epilepsy looks like in Edgar Farias . . .

Anything but sick.

“The Creative Mama”: October 2011

Here is the link to this month’s installment of “The Play’s the Thing” on The Creative Mama.

http://thecreativemama.com/the-play%e2%80%99s-the-thing/

I am very proud of my affiliation with this outstanding site and particularly proud of this piece.

We’ve had a lot of changes around here lately since Edgar’s diagnosis of epilepsy.  And while these changes have presented challenges I never would have anticipated, they have also presented previously unknown depths of compassion. 

Please comment–here and/or on the The Creative Mama–and let me know what you think. 

And thank you, always, for reading.

The Perfect Gift

As Oscar and I meandered up the main aisle of our local drugstore yesterday, we came upon a strategically placed display of Pillow Pets.  If you’re not familiar with this toy, it features a wildly popular array  of super-soft stuffed animals that transform as needed from “pillow” to “pet”–thus the name, I suppose.   They come in many iterations–you name the animal, it is probably represented in a Pillow Pet.

I tried to ignore the display; and with Oscar in tow, I thought I could easily get away with it as his preference in toys leans toward the hard plastic variety. 

But Oscar stopped at the foot of the display.  He looked at it and said, “Mom, Edgar has had a hard week.  We should get him a Pillow Pet.”

It was pretty hard to argue with his logic and even harder to dismiss this magnanimous gesture; so, I said, “Good idea.  Which one do you think he’d like?”

I knew which one Edgar would like.  It was staring at me, through me even.  A gorgeous, lush lavender unicorn with soulful eyes and a sassy smile that I could just picture in Edgar’s enveloping arms.

Oscar saw the unicorn, too, and then promptly pretended he hadn’t.  Edgar’s propensity for all things soft and occasionally pink or purple has at times challenged Oscar’s still developing sense of so-called gender norms.  He picked up the dog, inspected it, and said, “I think he’d like this one.” 

But then in the same moment he put it back.  Whether it was with resignation or what I hope is his ability to step outside of himself and truly think of others, he picked up the unicorn and handed it to me.

He said, “Here, this is the one he’d want.”  However, he promptly added, “But you need to take it to the register.”

I’ll take that as one giant leap forward with only the smallest of steps back. 

Well done, Oscar. 

Right Place at the Right Time

“Epilepsy should be diagnosed as early as possible to give a child the best chance for treatment success and a normal childhood and future.” http://www.health24.com/medical/Condition_centres/777-792-809-1680,17518.asp

The first seizure lasted only ten seconds.  She could have been in the other room, tending to one of the other children, tidying up the kitchen after lunch.  She could have missed it easily.   But she didn’t.  

Because of what she observed, we went to the doctor.  The doctor ordered an EEG.  And we, as Edgar’s parents, were on the lookout.

If she had missed that first seizure, I might have missed the second.  Or, if I hadn’t missed it, I might have mistaken it for something else–inattention, early morning silliness. 

Because of her, I knew what it was, what to do, where to go.

Because of her, Edgar’s diagnosis was early and swift.

And because of her, this clever, creative, very silly, very beautiful boy has every chance to live the life he deserves.

 

Colleen Finn, we love you and are forever in your debt.  Thank you.

We See What We See

When you have to keep a six-year-old child up until 2 AM–especially a six-year-old child who loves to sleep–you have to get clever.  Of course, because it is a six-year-old child, you can only get SO clever.

Edgar’s sleep-deprived EEG scheduled for 9:30 AM on Friday morning meant that he could get only four hours of sleep on Thursday night.  So, where do all the cool six-year-olds hang out in the wee hours of the night?  Wal-Mart and Stop & Shop are open until 10 PM and midnight respectively, which left us with two hours to finagle. 

We landed at Ma’s Donuts–a local 24-hour eatery–a little after midnight and selected any number of high-calorie treats and sat down. 

As Edgar and I were talking–about school, about his upcoming visit to the hospital, about Halloween–I removed the cover from my hot tea to let it cool.  He stared in amazement at the steam, and I could see the proverbial wheels turning.  He removed a flashlight he had procured at Wal-Mart two hours before from his pocket and asked, “Mom, what would that steam look like if I flash my green light on it?” 

He turned on the light and aimed it at the steam, marveling at the swirl of green fog and remarked, “Whoa . . . It looks like special effects.”

Our evening continued, and I finished my tea.  Edgar asked to see my tea bag–and before I could explain how steeping works, he had the teabag open and was arranging the damp tea leaves on a plate, creating a city with buildings of varying height.

By 1:15 AM, our remaining crumbs attracted the attention of the resident fruit fly.  While most people would shoo the creature away, Edgar invited it to join us, was sad when it momentarily flew off, and was anxious to talk to it.  When it eventually returned and perched on his plate, he looked at it with what I can only term love and said, “Guess what, fly?  Tomorrow the doctors are going to look at my brain!  Isn’t that cool?”

As I sat there at in the middle of the night at a mom-and-pop donut shop and stared in awe at my beautiful boy, I thought about what the doctors are going to see when they “look at [his] brain.”  And I realized that no matter what they see, they won’t see what I see–a creative, compassionate boy who can see theatrical effects in a cup of tea, a city sculpture in a pile of tea leaves, and a confidant in a fruit fly.

There is no one like Edgar.  How could there be?  And while an EEG and neurologist will see much, they won’t see that.  And I realized at that moment how very lucky we are.

The Power of Love

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” –Lao Tzu

This sentiment was on my mind Monday afternoon as I flew home from Berlin and thought about a city that because it is deeply loved and, in turn, loves deeply is able to emerge from a painful past with wisdom and dignity. 

Little did I know that in less than 24 hours I would once again turn to Lao Tzu.

A drowsy Tuesday morning after a long weekend in Germany gave way to an early afternoon phone call at work from our daycare provider and good friend who was taking care of Edgar since he had the day off from school.  In the seven years I have known Colleen, she has never called me at work.  She understands children and has a powerful sense of what is worth worrying about and what is not.  And she is anything but an alarmist.

She described what had happened.  And as I stood listening to her words, watching the world literally swirl around me, I asked her, “What do you think this means?”  And she said, “I think he had seizure.”

Edgar did, in fact, have what was most likely a seizure yesterday afternoon.  And on Friday morning he is facing an EEG to find out for sure.  

And I would be lying if I said I was not scared–of the known and the unknown, of the fact that his tiny 39-pound six-year-old body has been through so much, that this embodiment of kindness and sweetness in the world has to suffer.

But yet I know if the love Edgar gives and the love we return to him are any indication, we will have the strength and courage we need to navigate this path. 

We have to.  It’s Edgar.

Hard-Working Boys

Front and center in the main room of the Providence Children’s Museum is a quote from the inimitable Tom Sawyer: 

Seeing this quote–from one of the hardest-working, playful characters I know–juxtaposed with my own children engaged in the nearby exhibits got me thinking about the concepts of work and play. 

Watching children in a children’s museum–or on a playground, or in their own backyard–it is clear that their bodies are doing what they’re “obliged to do.”  In other words, for a child, what looks to be mere play is actually work.  It’s their work. 

As they start to discover the properties of water

or engage in a physics experiment

or consider geometric shapes

they are working.  And hard at that.  Put a child in a children’s museum and watch them run, and you can’t help but notice how completely they are compelled to move, to learn, to discover. 

We might call it play; they might even call it play–but I’m going to defer to Tom Sawyer on this one.  This is work–obligatory, serious, hard work.  

So, if you’re looking for me at the children’s museum, you’ll find me unobtrusively holding up one of the walls–because far be it from me that I should interfere with anyone’s important work.