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.

Fazed by the Next Phase

We have made a lot of trips to the pharmacy.

Epilepsy will do that.

IMG_3344But today was a trip unlike any other.

Today was the day we picked up what we hope is our son’s last prescription.

The last one.

As in seizure-free and soon-to-be medication-free.

As in exhilarating and terrifying.

With every pill, we inch closer to the day–the day when science tells us he is eligible to be free.

But also the day when our hearts will beat with worry that he will once again be vulnerable.

A time to exhale and a time to hold our breath.

A rite of passage, a celebration for our son.

But something quite different for us.

These pills have been our normal.

They have been what stopped the seizures, what saved him.

And while we wish he never had need for them in the first place, we can’t imagine what life would have been like if not for them.

Saying goodbye to them should be so easy.

But it’s not.

Nothing about this has been easy.

But in a few months’ time, as this bottle empties, our son will begin this next phase.

And we will be by his side–as we have for every step–needing him to guide us now more than ever.

Steering His Course in Health

2013-10-18Give a man health and a course to steer, and he’ll never stop to trouble about whether he’s happy or not.”  –George Bernard Shaw

I wish last fall when the school picture on the left came home and I looked deep into my son’s tired eyes, at his strained smile, I could have had a vision of the picture on the right.

I wish I could have known that just one year later his exhausted but still beautiful face would be transformed–that his eyes would brighten, his smile turn genuine.

I wish I could have known for certain that everything we were doing to ensure his health, his happiness, was right–that no matter the challenges, he was going to emerge on the other side of it all stronger.

But I didn’t have that vision.  I didn’t know.

I only believed.

Let’s Go for a Ride

If there is a plus side to a diagnosis of epilepsy, it is this: the opportunity to meet regularly with a neuropsychologist who has the power, through her arsenal of materials and incisive intellect, to ascertain exactly where your child’s strengths reside and those areas where additional attention may need to be paid.

Our eight-year-old son Edgar lost two-and-a-half years of his early schooling to undiagnosed ADHD, epilepsy, and the side effects of anti-seizure remedies.  From age five to seven-and-a-half, he operated under the haze of medication, necessary though it was, the threat of seizures, and the feeling, as one struggling with ADHD, that he was crawling out of his skin.  That there are gaps in his learning isn’t surprising; that he learned anything at all is nothing short of miraculous.

However, this week we heard—from the expert who would know—that all is well.  He is thriving, and his potential for learning is as vast as yours or mine—and maybe more.  He is positive, motivated, and will be able to do whatever it is he wants.  The world is his—and though we always believed it, it is nice to know it.

IMG_2877But this post isn’t about Edgar’s most recent triumphs, as worthy of a post and a celebration though they are.  It is about his brother Oscar, who, roughly a year-and-a-half ago, said something about his brother I have never forgotten.  He asked me, when Edgar was in the throes of his most debilitating seizures, if Edgar would be able to learn.  Oscar understood, even then, due to his own need to know and our careful explanations, that seizures were caused by intense electrical activity in the brain.  He knew thinking and learning happened in the brain, so it wasn’t a stretch for him to make the next leap.

I told him that Edgar will be able to do anything anyone else can, that we just have to believe in him.

He asked me then if everyone will believe in Edgar or if some people think epilepsy hurts your brain.

I talked to him about the stigma of epilepsy, about the discrimination those who have it faced.

Then Oscar said, “Well, I can’t wait to take Edgar around in about ten years and show him off to everyone who ever doubted he could do it.  I’ll put him in my car and drive him around myself just to show everyone how great he became.”

Two brothers driving around, one so proud of the other he is compelled to show him off, to let the world know when someone believes in you, loves you, the world is yours; the other one the living embodiment of that fact.

If that doesn’t give you hope, nothing will.

Dialing It Back

Navigating the divide between your personal goals and what is in the best interest of your children is a constant work in progress.  It’s never complete; and each new turn brings up previously unforeseen complications.

That I love to write is no secret.  What may be “the secret,” however, is why I do it.  While occasionally what I have written has garnered the attention and interest of others, the reason I am compelled to sit down at the keyboard every night is simple: I write for my children.  Every letter I type, every sentence I string together is with the thought that I am in some small way making their lives easier.

We are an adoptive family; and because of that fact we face challenges different from those faced by biological families.  Our son has epilepsy and ADHD; and because of those facts we face challenges different from those who are not contending with those conditions.   I write about the life we live because I want to share a reality that would otherwise be shrouded from others and by doing so hope to dispel misconceptions.  I write to remove some of the brambles and stones that line our family’s path so that when my children walk it, it can be with a higher head and a firmer step.

The fact that this work has led to other opportunities has been largely positive.  Reaching a larger audience means the actualization of my goal is enhanced.  The more people who read or hear my meager words, the more who will potentially understand the beauty of adoption, the trials and tribulations and tremendous victories that exist when your child is battling serious health conditions and learning differences.

What is not always positive, however, are people’s comments.  While I am always interested in what people think and appreciate the boundless support and camaraderie I have experienced through my writing, I don’t write about my family to hear other people’s criticism or, worse, diagnoses from afar.  Our twenty-first-century world has allowed the great mass of the anonymous to pontificate immediately and readily from behind a keyboard, brandishing whatever vitriol suits their fancy and never even having to sign their name.

The issue, indeed the problem, though, is exacerbated when you are writing for your children, when your writing is the legacy you are choosing to leave to those you love most.  My sons, in reading the words I have written for them, to them, won’t be able to escape the accompanying comments—the comments that occasionally question their mother’s parenting, the attempts to analyze anonymously and from afar their complex circumstances.

My skin is not so thin that I seek to avoid criticism at all costs.  I understand if you put something out there, you open yourself up to commentary.  I understand that when people are permitted to respond immediately and namelessly, the potential for ill-informed if not malicious commentary is very real. And I understand that it’s in any writer’s best interest to ignore most comments and to persevere.  I understand that if you walk away, the denigrators win.

But, you see, this is not a contest—a me against them struggle of sorts.  This is one mother writing for her three children who does not want her sons to read the nastiness that some people feel passes for intelligent commentary, one mother who does not have the inclination let alone the energy to take on every unfortunate remark.  Yes, I could explain to my sons that this is the cost of sharing our story, that these things happen.  I could tell them that years ago if someone had an opinion on an article they read, they had to write a letter, put it in an envelope, stamp it, and walk to the mailbox.  They had to sign their name.  And even then there was no guarantee it would be printed.  I could tell them that today articles get linked on Facebook or other sites and anyone can comment—impulsively and, as long as they don’t swear or otherwise violate the terms of use, malevolently.

And as I sit here tonight listening to my sons playing in the other room, I think that though this is their world, they did not ask for my participation in it.  This isn’t just my story; it’s ours.

I will continue to write because I have to.  My blog will exist because it belongs to my children.  But beyond that—the world where it’s all about how many “Likes” you have, how many visitors have clicked on your page—is no longer for me.  Today comments that would never have been published in the past because they did nothing to advance any conversation, intelligent or otherwise, are allowed to subsist online for all to see—all in the name of acquiring and hanging onto followers.  And if you want to write, it seems as though you have to live in this world.

That is, of course, unless you refuse.

And I refuse.

Maybe we all should.

Nothing Special

Is your son special needs?

This was a question posed to me this week about Edgar—who, just like your son or your neighbor’s son or your grandson, is most assuredly special.

IMG_2923However, Edgar has epilepsy and ADHD, so the question had more to do with whether or not our son was the recipient of special education services than his overall uniqueness or individuality.

As an English teacher, though, and a mother who is “the parent of a child with special needs,” the word “special” has been on my mind since this person’s well-meaning question.

Type “special” into your thesaurus or thumb through the “s’s” of your old paper edition and you will see synonyms such as “singular,” “unusual,” “different,” and “separate.”

Think about it in other arenas, such as a special photograph or memento or a special set of dishes you inherited from your grandparents, and you are left with connotations that hover around notions of fragility or breakability—that a person with “special needs” needs “special care,” needs to be handled with kid gloves lest they crumble.

And fragility and breakability are not concepts I want associated with my son.

Yes, my son has epilepsy and he has ADHD.  Accommodations in his educational program need to be in place not to mention on the home front—accommodations that help to even the playing field for him, that will allow him to be successful and to achieve the same standards as his peers, as those who get to traipse through life without the burden of labels.

But Edgar is strong; he is resilient.  He is wise and has been through more in his short eight years than I have in my four-plus decades.   And despite his particular set of necessary accommodations it is important that the world not see him as “unusual” or “separate.”  His is among us and one of us.

The intentions of the phrase “special needs,” I believe, are pure; but in reality, and at least for my son, they ring as demeaning, endeavoring to keep him separate, to have him viewed as different and delicate.

So, no, my son is not “special needs” any more than anyone else.  The needs he has as he navigates the planet are special and unique to him just as the needs you have as you navigate the planet are special and unique to you.  Expect the same from him as you would from yourself while remembering the burden he carries that you do not.  Offer accommodations that are empowering and appropriate.

Then drop all the labels and just call him Edgar.

Necessity Is the Mother of Reinvention

“The best way to find yourself, is to lose yourself in the service of others.”  ~Mohandas Gandhi

I’ve known this for some time, could always articulate if you had asked–perhaps not as elegantly as Gandhi but an iteration of it to be sure.

But when you’re in the throes of difficulties, especially difficulties related to a loved one’s health, it is oh-so-easy to forget.

When our now-eight-year-old son Edgar was diagnosed with epilepsy nearly two years ago, my life’s focus pivoted and rested squarely on him and getting him to a point where he could, if it were possible, live seizure-free.  My focus on serving others was, embarrassingly, not even on the back burner.  It was farther away than that, much farther.

I wish I had remembered Gandhi’s words if not for the good they would have inspired me to do for others but for the ultimate good they would have done for me.  But I didn’t.  I could think only of my son.

Enter The Matty Fund, Rhode Island’s only epilepsy resource center.  Led by Richard and Debra Siravo, who lost their beautiful son Matty to epilepsy ten years ago, I stood in awe of what these two heroes among us were able to accomplish in the wake of such profound tragedy, not realizing that I, too, had the potential to make a difference.

Never ones to rest on their laurels, they sought last spring to expand their Discovering My Epilepsy Support Groups throughout Rhode Island and wanted to include Newport County, my particular stomping ground to be exact.

Photo Credit: Newport Daily News and Dave Hansen

Photo Credit: Newport Daily News and Dave Hansen

This Friday our first support group for families affected by epilepsy will be held.  It will be facilitated by Bethany Gilpin, mother to, coincidentally, an eight-year-old boy with epilepsy, and me.


Me, the mother of a child who still fears for her son’s safety, who still, whenever an ambulance goes by wonders if it’s for her son, who is still negotiating medications and trips to the neurologist, a mother who didn’t realize she had something to offer to others because she is still exhaustedly and exhaustively climbing this hill.

I think if you had asked me two years ago if I would have been interested in facilitating a support group for families living with epilepsy, I would have thought about it, understood the benefit of it, but would have concluded it would be best to wait until Edgar’s epilepsy was no longer the visceral daily factor it still is–once he was medication-free, no longer under the regular care of a pediatric neurologist, once he had “outgrown it,” once, to paraphrase Gandhi, I had “found myself.”

But when your child has epilepsy, you can’t sit around waiting to “find yourself.”  After your child’s first seizure, you realize how quickly and unexpectedly life can change; so, rather than waiting to find yourself, I have learned these last few weeks, the best course of action is to keep reinventing yourself and pushing yourself to depths you didn’t know you possessed.

The Siravos do–and in word and deed (and sometimes with a gentle nudge) inspire others to do so as well.  Thank you, Bethany, for joining me on this phase of my journey; and thank you, Richard and Deb, for knowing so, so much . . .