Listen, I know who you are. And although I can’t see or touch or feel you, I have looked you square in the face for the past ten years.

You are a mystery — an enigma — and you baffle teachers and therapists and coaches and bus drivers. You baffle me. And yet, I feel I know you almost better than I know myself.

You are smoke and mirrors. You are illusion. You are the last kid out in a dodge ball game, ducking and weaving and escaping until the rest of the players give up and go home.

You are the panther who demands melatonin for six hours of sleep at night.

You are the cruel snake of anxiety, winding and curling around my child’s soul, whispering nonsense about dogs and wind chill factors.

You are the thief trying to steal my son from me.

You are Autism.

I hate you.

That’s right, I said it. Autism, I hate you.

I hate the way you make him touch all of his food and dip his fingers in every glass of milk before he can take one taste.

I hate that he won’t play sports because of you.

I hate how lonely you make him.

I hate the way you force him to painstakingly search for words while the rest of the world rushes over him in a tidal wave of jokes and irony and dialogue and language.

I hate that his poor brain is always turning, churning, obsessing, racing from maps to music to when Smucker’s first made strawberry jam. I want to scream at you to leave my son the hell alone, to let his mind rest for just one second.

I mean, honestly, he doesn’t even like strawberry jam.

And how about his body? Why can’t you just let his body be still? Watching you operate his arms and legs and hand, making him stim and jump and grunt through every room is like watching a puppeteer control the strings.

I hate the way you make me feel. With you around, I am stupid and tired and useless. I am unsure.

Last week, our family of seven drove to Connecticut to visit my sister. Please, don’t even act like you don’t know what I’m talking about, because I know you were there.

I know because for almost the entire two-hour drive, my sandy-haired son sat in the second row of our minivan and demanded we play and re-play the same three songs over and over, at precisely the same volume. If it wasn’t the right song in the right order at the right level, he shrieked like a madman.

You drove all of us crazy.

I want to tell you a secret. I know you think you keep all the secrets, but I also have one: every once in a great while, when I’m frustrated and lost, I go up into our bedroom and I cry. I sit in the big leather chair in the corner by the window and I cry for the boy who wants to live alone but may not, who wants to cross the stage during graduation and have play dates and open his own bakery even though at 10 years old, he doesn’t understand money. I cry for his naiveté and his innocence, and for the way his heart and mind cannot keep pace with his tall, growing body. I cry for the boy who might have been.

Me and you, we spend the day engaged in a tug-of-war, except instead of a long rope, we each hold one of his hands. I pull him toward me — into a world full of high school diplomas and karate and dollars and cents — and you yank him backwards into a dark spectrum abyss where apparently Nicki Minaj holds concerts around the clock.

About an hour before we got to my sister’s, you released your hold over my son and you let him sleep. When I looked into the backseat and saw how his face had relaxed, his breathing settled and his eyes closed, I felt grateful he could rest.

But you woke with a vengeance ten minutes from her house.

“Why? Is the radio off? Where? Are my songs? Turn them on, turn them on, turn them on.”

And once we pulled into her driveway, you and I began our contest of tug-of-war once more.

“Her dogs. The dogs! I don’t want to see them.”

“Jack! Come on! You aren’t afraid of dogs anymore, remember? Now that we have a puppy?”

But you couldn’t let it be, could you, Autism? You sidled up and grasped his fingers.

“No,” my 10-year-old son whined and cried in his unusual grammar. “No dogs! No dogs! Put away them! Into the basement.”

After about two hours at my sister’s house, we both grew tired. I don’t know about you, but I had a headache.

I could feel you, sitting next to me on the couch watching all of kids play and dance and open presents. I could practically hear your ragged, uneven breathing. But for the first time all day, we each let go of his hands and stepped away.

And as we slumped against the cushions, I noticed her dog, a big chocolate lab with a graying muzzle, lying in the middle of the floor. I saw my tall boy step carefully around him at first, then over him, then plop down next to him with a sigh.

And I realized that I can’t live with you and I’ll never live without you, because I know you aren’t going anywhere.

And neither am I. You must believe me, Autism, when I tell you that I will never pack up my ball and go home.

But sitting with you on the tan couch in my sister’s living room, I thought that maybe, maybe, we can be friends. Tentative, reluctant, quiet, unlikely friends.

You are giggling now, Autism, I know you are. You are smirking and grinning in the dark corner. Your eyes are shining at me like the smuggest Cheshire Cat. You know. You know I could never hate you.

Because, like the quintessential tug-of-war, I, too, am pulled in two directions at once.

For all the things you make him — rigid and bossy and lonely and sad — you also make him funny and lovable and charming and smart. In some absurd way, you make him whole. To love him is to love you, too.

And oh, how I love him.

Once in a while I cry for the boy who might have been, but every single day I smile for the boy who is. I smile, laugh, chuckle, giggle and love.

I know who you are.

You are the quiet joke at the dinner table that takes everyone by surprise.

You are the quick one-armed hug from behind and the first bite of sweet chocolate cake.

“Mom. This one. I did the frosting on myself.”

You are opportunity and risk and chance. You are possibility and hope. You are progress.

You are the 10-year-old boy in a red turtleneck, his arm slung casually around a big, gentle dog.

You are Jack.

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In peace and friendship,

Jack’s Mom

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I’ve never been one for remembering certain types of anniversaries. I admit to forgetting the birth dates of beloved grandparents long passed. I have only a passing acquaintance with the month and year they were buried. This doesn’t mean I don’t pay attention to certain milestone events — it’s just that I don’t feel constrained to remember them on one particular day.

I keep special people alive by talking about them with my sons, remembering them when the scent of homemade chocolate chip cookies assails me or when a certain smile on my eldest son’s face reminds me of a loved one who’s gone. Remembrance is random for me, usually elicited by a specific trigger.

And this morning I had that moment when I came upon some old papers from Kennedy Krieger.

My eldest son, Justin, who has severe autism, was officially diagnosed with moderate to severe autism ten years ago in the fall of 2004. He’d graced this earth for almost a year and a half at that point, and quite frankly, the diagnosis was not a shock to me or his father. I’d had questions about his development dating back to his sixth month of life, concerns that only deepened as we compared his milestones with those of our friends’ babies who’d been born within a month of ours.

We weren’t stunned that day in Baltimore — at the time, we were mostly saddened and deeply scared. The words “pervasive developmental disorder,” while not surprising, did put a finality on the situation, particularly the part about the disorder being lifelong. I can recall heading out to the parking lot with my spouse, Jeff, holding Justin in one arm and my husband’s hand in the other. We were both exhausted, as our boy had been up several times the night before, plus we were simply overwhelmed. I remember feeling angry about the diagnosis, but mostly, I was just tired. Tired of sleepless nights, tantrums and the sinking feeling that I wasn’t up to the task of getting my son what he’d need for the next 80 years.

I should mention that I’m a planner.

That moment in the parking lot was a pivotal one for me, and as I sat this morning clutching the very papers we walked out with that day, I had such a strong desire to go back in time and tell that terrified mom a few things about the future a decade later. Here are the top ten things I wish I’d known then:

1) There will be hard days ahead, sometimes grueling. There will also be moments of indescribable joy. You will gain the perspective to understand that the difficult times will not last forever, even if it seems that they will.

2) You will still have a social life, even if you lose some friends along the way. You will make friends with all of your sons’ therapists.

3) The Internet will tell you he won’t talk or read if he’s not doing so at 7. He will do both at 11, and the best part won’t even be the reading or talking. It will be the abundant pride he shows you when he accomplishes these goals.

4) He will, eventually, spend most of his days happy. The things that make him happy are not any of the things you anticipated would make him happy. You will be OK with this.

5) You will still worry compulsively about what will happen to him when you and his father are gone. This will never change. You will learn to live with it.

6) Your days will often remain challenging, but with his maturity and increased independence things will get easier, just like they generally do with neurotypical kids.

7) Your marriage will not fall apart. It will not only survive the bumpy parts, it will thrive.

8) You will form great friendships with other autism mommies. They will “get it.” You will cherish them.

9) Chocolate (often accompanied by a good glass of wine) will continue to help considerably.

10) Ten years later he will still look at you with the same depth of love with which he looks at you now, only the bond between you will have deepened indelibly. Those moments of connection with him will carry you through.

Disney and Halloween 2013 189

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Shortly after Alex Kormann, 17, lost his father, Russ Kormann, to renal cancer this November, he received a package of merchandise from the Indianapolis Colts, The INDY Star reported. The Kormann family had been Colts fans even before the team relocated from Baltimore in 1984.

Alex’s cousin, Tom Habib, sent a letter to the Colts telling them of Russ Kormann’s dedication to the team and of his recent passing. Alex was touched by the gesture alone — but was even more touched when Colts coach Chuck Pagano sent him a personal letter a week later. The note offered encouragement and advice in his time of grieving.

I teared up,” Alex told The INDY Star. “I was stunned he’d take the time to respond.”

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“The @Colts head coach just sent me a personal letter regarding the loss of my father. Made me cry. @ESPNNFL @nfl” Via @KormannAlex on Twitter

Pagano is no stranger to cancer, as he fought a battle with leukemia in 2012, missing much of his first season as the Colts coach, Fox Sports reported. He’s now in remission.

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If I could go back to the day it all started I would tell myself this is not the end; it’s only the beginning.

On August 28, 2013, my son, Dylan, was diagnosed with autism spectrum disorder.

I remember sitting in an exam room at Boston Children’s Hospital. The green plastic chairs and brightly colored toys punctuated the colorless room. It was a day just like any other day. My son had previously been examined by a neurologist, an audiologist, a geneticist, a gastroenterologist, a dermatologist and early intervention specialists. Now we were sitting in the Office of Developmental Medicine, and I was expecting to hear the same thing we’d heard every other time — that one disorder or another had been ruled out, but maybe you should see another specialist in another field.

IMG_2435 Only there was something different about this time. I could tell by the way the doctor was speaking to me, listing my son’s strengths, softening the blow that was coming next.

When she said the words “autism spectrum disorder,” I fought with everything I had to hold back the tears trying to sneak their way out of the corners of my eyes. I remember being angry with myself for being unable to control my emotions. I remember being ashamed that my body was trying to mourn my child who was alive, playing with trucks on the floor. And I recall wandering through the parking garage, finding my car, sitting in the passenger seat and not speaking for the entire ride home.

Summer turned to fall and I found myself dealing with therapists, the public school system, educational advocates and more doctors. As my son’s sign language turned to speech, I learned that Itoo could vocalize new things; I was capable of advocating for him. When he became steadier on his feet, I too felt strong enough to conquer this curveball coming at us. And even though we were making progress, we both experienced setbacks and regression but continued to crawl forward.

Fall became winter and with it, the snow began to fall from the sky, and my husband and I began to float away from each other just like the flakes outside my window. Things continued to change, life continued to move forward; the world doesn’t stop because you have a child with autism.

Over a year has passed since that day at Children’s Hospital, and today I sit here writing, looking back not on where we’ve been but at how far we’ve come. And although I know our journey together will not be easy, I know it will change us for the better.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My husband’s injury does not define him. But I let it define me for a long time.

I’m pretty sure it’s tied into the fact that I liked being a martyr… I did. Check out this post I wrote about it: Caregivers as Martyrs.

Yes, unfortunately it’s true. I held onto my badge as my husband’s caregiver for all the wrong reasons… I wanted people to notice me for all I was giving up. I was screaming, “Notice me! Notice me! I’m so sad! Feel sorry for me! Please!”

It was terrible.

But I needed to do it as part of my healing process. Saying it all out loud feels pretty terrible, but it’s the truth. I was selfish and bitter and angry and lonely and my heart was closed.

But a lot has changed since then and most of it within me. Last week I asked my husband, B, if he thought our life would be a lot different if he hadn’t broken his neck. He looked at me and laughed and said, “Of course,” like I was an f’ing idiot. But then he got quiet and said, “I don’t think it would be as great.”

Uhhh… what?

“For real?” I asked.

“For real,” he said.

“Look at me,” he said. “I’m different. So are you. And in a good way. We wouldn’t appreciate things or have the patience or openness that we have if I hadn’t been injured.”

Now, for those that knew my husband before his injury, you would know how shocking that statement is. B could once be considered arrogant — to the point that he wasn’t very likable. I actually thought he was a big jerk when we first met, and I did not like him. He also wasn’t very loving and open or patient with those close to him. And hugging? Out. Of. The. Question. His family didn’t hug. Nope. Not at all.

That’s not a bad thing. It’s not. That’s just how his family was and how he was raised. Unfortunately for him, I was raised the opposite. I hug complete strangers. Someone needs a hug? I’m in. And B quickly learned he was going to have to like hugging. The first time he met my mom, she hugged him for a while. I thought he was going to throw up.

Then he got injured. And he had to immediately get used to everyone touching him. Helping him. Helping him eat. Dress. Pee. Helping him with everything.

Everyone was in his personal space all the time. He had to change. And so he did — and well. I can say, without a doubt, that my husband is one of the most patient men I’ve ever met. (I’m still working on it…)

He’s loving and caring and open and appreciative of the life we lead. I’ve learned a lot from him. But the greatest lesson he’s taught me is that his injury doesn’t define him. He won’t let it.

He’s injured. He’s paralyzed. But he lives his life like his disability is a normal part of him and not one to focus on. It’s a part of him the same way his eyes are blue. It just happened to be a trait he obtained when he was 30…

He lives his life with a grace and humility I never thought I’d see in him. When he was first injured, I threw myself into spinal cord injury (SCI) research and support groups and fundraising. It was what I needed to do.

He never wanted to be involved. He’d listen when I’d talk about them, but he never was interested. He supported my involvement but didn’t want to join a support group or learn more about SCIs. He left that to me. He instead just figured out by himself how to work and live — he does both now incredibly well.

I think this is part of why he’s so healthy. Why he’s going to outlive me. Because he’s figured out this whole “life” thing. Living isn’t about focusing on the future or the past, which I do often. Living is about staying in the present. Getting up every day and figuring out that day. That moment. Then going to bed and doing it all the next day.

So I’ve slowed down in my hunt for a cure. I haven’t stopped, nor will I ever. But I’m realistic about it now. I no longer hunt online for ridiculous cures and no longer spray his scar with healing herbs (Yes, I did do this once. Yes, I’m a scientist. Yes, I have a degree in biology. Yes, I was desperate.).

Instead, I will now take time to enjoy what we have… our daughter. Our love. Our work. Our friends. Our families. My black lab, Murphy.

I will also remind myself that because of my husband’s injury, I have changed. In a good way. My heart is open. My heart is full. I have helped people and continue to help people. All of these things I wouldn’t have without his injury. I will not let his injury define me but instead let it be a part of our lives. One that we will treasure because of what it has brought us.

Now, please don’t pretend to vomit from that statement since it was really, really hard to write and did feel a bit fake. I mean… treasure it? For real?  Well, yes! It is!

Look at all it’s brought us. It has given us a beautiful house. A van that uses hydraulics. A wheelchair that can carry groceries. Better parking spots. Bigger bathrooms.

It’s also brought us closer as a family. It’s opened our eyes and hearts to others’ needs. It’s brought our families closer together. It’s brought us patience and humility. It’s helped introduce us to friends who have brought so much to our lives.

It’s brought us much pain but so much more joy that I can no longer ignore. Because of his injury, B decided to pursue a Master’s in Health Policy and has a job now that he loves. It’s also brought me closer to my passion — helping people. It’s made me realize that healing isn’t just about medicine and the body but must include the mind and soul and lots and lots of love.

His injury has caused many tears but so much more love. I am a better person for it.


This post originally appeared on We Rock, They Roll.

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I’m a believer that everything happens for a reason. I’ve had this deep-rooted belief as long as I can remember. It’s been tested time and time again throughout my life, and perhaps most people won’t understand why I would still believe it at all. Maybe it helps me cope with the numerous traumatic events I’ve endured. Maybe it’s just the way I was brought up and a reflection of my parents’ beliefs or the little bit of optimism I have in me. Most likely it’s a little of all the above.

This belief has gotten me through the tragic death of my brother, the Cystic Fibrosis diagnosis of my youngest son, and my oldest son’s Tourette syndrome diagnosis. I’m also hoping this belief will help me get through the recent loss of our 15-month-old daughter to childhood cancer.


I remind myself that without my brother dying, I most likely would never have met my soul mate. Without the diseases and disorders my children have had, there would be so many great people I would never have met. Without my daughter’s cancer, I wouldn’t know how kind, giving and loving strangers from all over the world can be.

I’m sure there are positives that came out of these things for other people. Maybe these events have made some people stronger, more thankful or given them reason to form closer relationships with their loved ones. As hard as it is to sometimes look at these things in an optimistic way, sometimes it’s the only way — the only way to not start a downward spiral of self-pity and depression.

Please don’t get me wrong. I wish like hell these things had never happened. I want my brother and daughter back immensely. I want my boys to live normal lives. But I know these wishes cannot be granted, so I guess I have to do the next best thing and keep moving. Keep pushing. And part of that has to come from the little bit of optimism that is left in me and the belief that there really is reason to all this madness.

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This post originally appeared on A Splendidly Imperfect Existence

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