More to Him, More to All

IMG_8453Three years ago today he had a seizure. It was, as they say, a doozy. We held our breath, watched his very small body betray him for how many times I cannot and am not inclined to count, and held him tight as he endured the aftermath.

We didn’t know then it was going to be the last—at least for the next three years—that that seizure would mark the beginning of a hiatus that would give our son the opportunity to make up for the proverbial lost time, would allow him to make the strides that had necessarily eluded him while epilepsy exerted its control over every facet of his being.

Three years later our son’s face no longer bears the evidence of his trials. To meet him today you would never know that while other Kindergarteners and first-graders spent their afternoons happily playing, he was sound asleep in his school clothes, the soporific effects of medication more than his small body could bear. You would never know of the afternoons he was simply too weak to walk home from the playground or through the aquarium and had to ride in his toddler brother’s stroller. You would never know how his hair fell out or how sunken and sad his eyes once were.

He is a marvel to me—in many more ways than I can ever articulate—but more than that he is a reminder that we can never presume to know anything about anyone based on the smiles they wear, the energy they exude. What is behind those smiles and under that energy is where the stories live.

Our son’s is a tale of resilience, yes. But it is also a tale of the danger of judging or assessing others based solely on appearances. There is more to him than anyone who doesn’t know him could ever know. There is more to all of us than anyone who doesn’t know us could ever know. Our son is not simply a silly nine-year-old boy who laughs too loudly at equally silly jokes, who makes messes sometimes faster than he (or we) can clean them, or knows just the right way to get under his brothers’ skin.

He is also not simply the avid reader, the eager learner, the boy with the heart of gold.

He is a child who already knows pain, who remembers what epilepsy was and is. He understands not being able to count on his body, and he understands fear.

He is simultaneously similar to and completely different from everyone else.

Just like everyone else.




His, Ours, and the World’s

Photo courtesy of Don Farias Photography

Photo courtesy of Don Farias Photography

I have reserved the word miracle for very few events, very few occasions.  In fact, I think I can count on one hand the number of times I have used it in earnest, when what I was describing, living, truly rose to the level proffered by the word–or at least the intent of it.

We overuse the word—It’s a miracle when we hit every green light when we’re running late; a miracle when dinner, homework, and baths go off without a hitch; when you find your cellphone your child accidentally put in his toy bin in a moment of overzealous cleaning.

But those aren’t miracles, of course.

Some say miracles happen every day, and I’m sure they do; however, as individuals we don’t always have front-row seats.  Maybe that’s why we read, why feel-good stories are so palliative when interspersed amongst the typical news of the day . . .

The article continues here on The Creative Mama.

Thank you for reading!

Just Because You Can’t See It

This week I read a post on Facebook from a young man who had just earned his first “A” on an assignment in college.  He was proud—justifiably so—and wanted to let others know of his success.   As a teacher, I smiled, happy that an academic success compelled him to post.

Then I read further.

This was a young man who was proud, yes, but peppered in was discernible anger—also justifiable.  Accompanying his post was a narrative in which he revealed the words that were said to him—by an adult who should have known better, a teacher working with students with special needs—words that have been keeping company with him for nearly twenty years.  In short, he was told he would never amount to anything, that the best he could hope for was a job in a fast-food restaurant.

I grimaced, as anyone, teacher or not, would; but as the parent of child with an IEP, I was particularly pained.   Despite our son’s health challenges and resulting rocky start in the world of formal education, we have never wavered in our belief that he could do anything anyone else could and more.  While we acceded he may need—temporarily or not—a different path to get where he wanted to go, there was never a question he would get there.

At 4 o’clock yesterday afternoon I planted seeds in my backyard with my youngest son.  I explained to him how each seed held the potential for life, how with the right care each would grow into a beautiful plant.  IMG_7292When we were finished planting, he looked at the containers with the seeds then at the elevated bed already bursting with the transplants we had put in two weeks before, and said, “The pots with the seeds look plain.  I don’t see anything there.”

I asked him to remember what was underneath the soil.  He smiled and held the seed packets in front of his eyes.  “The seeds for these beautiful plants.”

I told him to give the seeds time.  Then I asked him to come out with me every day to check, to make sure they have everything they need so they can grow and be the most amazing plants they can be.

Last night we received our son’s latest reading and math scores.  He exceeded—exceeded–all benchmarks for his grade and is thriving—thriving because everyone around him has believed in what was within, what was underneath those top layers, the shroud of epilepsy, anti-seizure medication, and ADHD, and has been committed to giving him what he needed to thrive.

The woman at the garden shop told me not to be surprised if I didn’t experience success with my first attempt at planting seeds.  She shrugged and said matter-of-factly, “Sometimes it doesn’t work.”

I told her it would work if I believed it would.

Another First

IMG_1881Tell me about the day you first saw me.

Edgar, age eight, asked this of me last night—a seemingly, deceptively simple question that is, in truth for him, anything but.

Living with undiagnosed ADHD, then a virtual loss of two years of his early childhood due to epilepsy, its accompanying seizures, and the side effects of the ultimately miraculous medicine that helped to bring those seizures to an end, Edgar has never lived anywhere but in the present.

The past and future have had very little meaning for him, and he has held them in even less regard.

It sounds charming, romantic and poetic even . . . a dreamy blue-eyed boy doing nothing more than following his bliss, the very personification of carpe diem—quick to forgive, and, yes, to forget.

But there is nothing charming about that same child asking you on a sunny May day if Christmas is “tomorrow” or in the middle of summer vacation if he has “school today.”

As a society, we regularly extol the virtues of living in the present and have collected all manner of pithy sayings about the dangers of dwelling in the past and the pointlessness of worrying about the future.  But it is because we have the luxury of understanding these concepts, of appreciating the fact they exist that we can chide ourselves when we go too far astray from this moment.

But when you are burdened with a condition (or two or more) with which your body—if not your mind– is forced to contend, getting through the day is sometimes the best you can do.  Living in the present isn’t a New Age luxury; it’s a mandate and often nothing more.

So, when your eight-year-old child, who has been diagnosed with and treated for ADHD, has experienced more than two years seizure-free, and is now medication-free in terms of his epilepsy, looks at you and finally asks about a monumental event from your past, his past, your shared past, this is very big news.

Very big.

Almost as big as the day I first saw him.  Edgar 2

Almost as big as the love I immediately and viscerally felt from seeing just a blurry paper photocopy of his hospital picture on an early evening in my living room in September 2005.

Almost as big as the moment I first held him in my arms in a visiting room at our adoption agency and knew that I would never, could never let him go.

I told Edgar last night about the day I first met him and watched him beam—with love, yes, but also with understanding, understanding that has necessarily eluded him for far too long.

And I saw in his eyes he—he—for the first time finally understood how big this was.

What I Wish

IMG_6567I wish I could go back to this moment–to say to this sweet boy whose body had been repeatedly ravaged by seizures, who was exhausted by the trauma of it all not to mention the side effects of the many medications he took, “It’s over–at least for the foreseeable future.”

I wish I had known on this day that he was going to come through it all, get to January 28, 2014, his two-year seizure-free anniversary, with abandon and thrive in ways we couldn’t yet imagine.

I wish I could have told him on this cold early February day in 2012, when he was so tired and so sad, that not only would he one day be seizure-free but medication-free.

I wish I could have held him and told him all I know now.

But all I could do then–and since–was hold him, tell him how much I love him, and then hold him some more.

It’s all we can ever do.

And sometimes it’s enough.

Tonight’s the Night

DSC_0016Since mid-October 2011, our now-eight-year-old son Edgar has taken medication to control the seizures associated with his epilepsy.  It took a while to get the medication “right,” but at its height he was on enough medication to simply break your heart.

Eventually his talented neurologist found the right blend, and his seizures stopped, and his progress was so steady and so positive that she was able, in time, to start slowly weaning him off it.

Last Friday he stopped his modest daytime dose, and tonight is the first night–in over two years–he will go to bed without his modest nighttime dose.

And I am scared.  Plain and simple.  Going from sleep to wakefulness for Edgar was often a seizure trigger; and I have been comfortable in harboring the belief that the medication–in whatever current quantity it was being prescribed–kept those morning seizures at bay.

But tonight I am compelled to reach out into the universe–cyber and otherwise–to ask for your good energy.  I don’t know what you believe–or sometimes even what I believe–but what I do know is this:  Without warning and completely unexpectedly Edgar’s seizures began; and just as mysteriously they stopped.  Life is full of challenges, but just as readily it presents what can only be termed miracles.

Edgar told me everything is going to be fine, and I believe him.  But I figured there was no harm in asking for the power of your intentions and for the miracle to continue.

801 Days Later

For the last two years, two months, and nine days, the first and most important task we have had to accomplish before our now-eight-year-old son Edgar started his day, indeed before we started ours, was to ensure his anti-seizure medicine–and, for a long time, medicines–had been administered.  It was a daily and vital ritual comprised of equal parts science and faith–that the process, these at times varying and ever-evolving concoctions, would stop his seizures, would relegate epilepsy to something merely in the background.

IMG_4860But this morning, as my small warrior sleeps, I find myself thinking about the profundity of this moment–how, when he wakes up during this Christmas vacation, he can play unencumbered and without interruption.  I don’t need to find him among a tangle of stuffed animals or follow him as he navigates his playroom to ensure he takes every last bit of his medicine.  Instead he can do simply and justly what eight-year-old children should be doing on a treasured day off from school–follow his bliss, wherever it takes him.

And for me, today, the first day without the layer of protection I have relied upon since the moment his neurologist told us he had epilepsy, I am going to watch him spend his day medication-free.

The science supports this move; but, today, for me, it’s much more about the faith.