Wednesday, August 12, 2015

Amy Winehouse's death was a tragedy, my son's life isn't

Dave and I saw Amy the other night, the documentary about Amy Winehouse. It's a powerful movie, the kind that leaves you sitting in the theater till the last credits roll, absorbing what you just watched. We knew the ending, of course, but not the events leading up to it—or the struggles that were the basis for many of Winehouse's songs. The film gives a good look at the vivacious, funny and super-talented woman behind the headlines and infamous addictions.

"Her death was a real tragedy," Dave said in the car ride on the way home, and I agreed.

That word. Tragedy. It's what people thought about Max after he had a stroke at birth. Heck, it's what I thought as I sat in the NICU beside the incubator that held an unconscious Max. How could this have happened to a baby?, I thought. The pediatric neurologist and neonatologist, aka Dr. Doom and Dr. Gloom, only spoke of the potentially worst outcomes, exacerbating my grief.

After Max came home, we had a baby naming party. A friend who unexpectedly lost two parents within a couple of years of each other leaned over to me in my kitchen that day and said, eyes filled with tears, "I've been through a lot, but what happened to you is worse." It was meant with kindness and empathy, but hearing that made me despair more during what was already the bleakest time of my life.

And then, there was Max, an exceptionally smiley, chubby-cheeked baby who cheerfully endured therapy sessions and basically charmed everyone who got to know him. A child who kept on progressing, slowly but surely, on his own timeline. By the time his first birthday came, I was no longer in mourning for the child I hadn't gotten; I could enjoy the one I had.

While what had happened to Max was shocking and awful, ultimately it wasn't a tragedy. Max is a sweet, loving, ebullient, bright, motivated kid with challenges that are more apparent than ones other people have. I am lucky to have him.

I know that some see his disabilities, even him, as a tragedy. Perhaps I would feel the same about a child with disabilities if I'd never had a child with cerebral palsy. I get lovely, concerned emails from people offering to say prayers for him. Like many parents of kids with special needs, I am all too familiar with The Pity Stare. But tragedy? No.

Tragedy is a family member stricken with disease. Tragedy is a child dying of cancer, as has happened in our community. Tragedy is a fatal car, train or plane crash or any serious accident. Tragedy is a catastrophic natural disaster and its victims. Tragedy is 9/11, Sandy Hook, anyone whose life has been taken by a raging gunman and people including Eric Garner and Robert Ethan Saylor who were killed by authorities. Tragedy is the murder of beautiful souls like Kayla Mueller who venture into areas of conflict and war zones to do good. Tragedy is a talented singer done in by fame and her own demons.

There are all kinds of tragedies in this world. My son, he isn't one of them.

Image source: Flickr/Mick O


  1. While Max is certainly not a tragedy, I would argue that what happened to him- that he had a stroke- is a tragedy. The same as I say it is a tragedy that my partners granddad had a stroke. That my grandma had a stroke. My mom's coworker. It doesn't make the person a tragedy- but what happened, to me, is a tragedy.
    It could be a difference of how we use the words- from what you list a a tragedy above, it seems that death, or imminent death, is how you use the word, while I would use it to talk about something that is terrible and likely life-altering.

    I wrote this because other people may use tragedy the same way I do, and I know I would feel terrible if someone took from it that their family or friend was a tragedy, rather than that the discrete event that happened was a tragedy. I'll have to keep this in mind going forward!

    1. Yes, this: Max's stroke itself was a tragedy. Everything after that--his struggles, his delays, and CERTAINLY his own self--are not. They may be the PRODUCT of a tragedy, but considering some of the strong and beautiful things that come out of tragedies (MADD, Alex's Lemonade Stand, the new focus on police-on-captive force), I see that as a good thing: Max is who he is--and who he is is truly awesome kid--because he was forged the same way we all are, out of a combination of how we're raised, and our innate personality, and all of the things that happen to us in this world, starting from before we're born. Yes, Max's stroke was a tragedy, but no more or less than the tragedies we all suffer every day...and I certainly hope we are not all of us tragedies, as that would be, well, tragic!

  2. HUGE love to you and your family ... Max has blessed you in ways you never imagined sitting there by his hospital crib, wondering where life would take you both. And look at the places you have been, the memories you have made and the smiles you have shared xxxx

  3. Thanks Ellen. Without too many words, I can say that I feel the same way about this topic.

  4. "Max is a sweet, loving, ebullient, bright, motivated kid with challenges that are more apparent than ones other people have. I am lucky to have him." Love that!

  5. "They Lived" (A Short Poem by Me)
    One untimely death is one too many.
    One escape unscathed is a miracle.
    One life altered is still a life
    And still a miracle
    Because they lived.

  6. Just because the situation with Max ended up differently than you expected or had hoped for...his life is in no way a tragedy. And I would even argue that his stroke was not a tragedy, although no doubt heart breaking. No one is promised a life without trials, but often the most good (for ourselves and others) is found in the most difficult situations.

    Our son is on the autism spectrum and I often feel so bad for him, it's hard for him to make friends, for me, parenting him has been very challenging. However, my husband (the ever optimistic one) constantly reminds us that there are no mistakes and God can use the difficulties that we both face for our benefit and the benefit of others...even if we don't see or understand those benefits yet.

    I, for one, am blessed to read about your precious son and to see how far he's come. It's an encouragement and helps to make me feel like I'm not alone in my own struggles. You wouldn't have been able to do that if the situation was different... :-)


Thanks for sharing!

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