My son is screaming in the other room, and I’m thinking about silence.

Not the literal type of silence, although I could use a little bit of that right now. I’m thinking about the stories we choose to tell and the ones that remain unwritten.

I’m thinking about the silences – intentional and unintentional – that shape what our history becomes. What gets remembered and what is forgotten.

I was planning to share a nice story of a boy and a horse, but that moment of success is being pre-empted. Today there is crying and screaming, and it doesn’t feel genuine to write about that good experience while ignoring this definitely not-good one.

In our Jekyll-and-Hyde reality, these seemingly incongruous narratives exist side-by-side. Ah yes, our quirky life has room for both. It’s the writer who chooses which one floats to the surface and which one sinks.

Our historical record is full of silences. Memoirists, biographers and historians shape our understanding of the past by emphasizing certain stories over others. Our informal personal histories are the same way – our photo albums and Facebook pages are self-censored, presenting a selected version of our true lives. We write about and photograph the milestones we want to celebrate and remember. We cherish the happy times. We might touch on the tragedies too, but the uglier, darker moments – the ones that, quite honestly, make us who we are – don’t get documented in the same way.

How do you choose what will be remembered?

Do you write about tragedy only after you have triumphed over it?

Do you document the inexplicable or hold your silence until meaning is found?

As a historian by training, I have a strong instinct to record all the ups and downs of my role as a parent, so that our family album is more accurate, more complete. But I hesitate because, of course, it’s not easy or fun to write about the hard days. There are rough patches that are not only difficult to describe, but painful to analyze and remember. I’m also aware that so many others have it much worse than we do, and I never want to appear ungrateful for what we have.

Besides, I am naturally drawn toward writing about the successes rather than the aggravations of parenting because I genuinely believe that, despite the drama, this life ain’t so bad. And, I think that sharing the unique perspective that comes from parenting a special needs child might give people who don’t know any better – those who are leading typical, boring lives – a hint that just because someone’s experience is different, that doesn’t mean that it’s tragic.

While it’s a release to vent about the challenges with other parents who “get it,” I think there’s a risk in airing the negative aspects of special needs parenting to the general public. Those stories can feed into the misconception that there is less joy in this kind of life than in others.

Take, for example, the very recognizable character of the soul-searching mother in the movie, Please Give. She is one of those people who feel an obligation to help those less fortunate, but she finds herself so overwhelmed by what she sees as the sadness and tragedy in the world that she is utterly useless to those who seek her support. When she attempts to volunteer at a day program, the befuddled program manager quickly ushers her out as she breaks down in tears while playing basketball with a group of developmentally disabled young adults. A group, mind you, who are all having a great time, despite the fact that she thinks they are “just so sad.”

I don’t want to encourage this kind of misguided sympathy by writing about the parts of my life that might look “sad” to others. Pity can be highly contagious and severely paralyzing for parents and caregivers, and I have a strong impulse to fight against it in what I choose to share.

Not that “doom and gloom” doesn’t have its place.  Personal stories of loss and difficulty are critical to open people’s wallets to fund research, to prove need and gain access to services, support and guidance.

Most of us with disabled kids know the drill – when your child is up for evaluations, that is not the time to brag about his or her strengths. You go against your maternal instincts to highlight all of those things he can’t do. Pull out the photos of meltdowns and videos of negative behaviors and – like the best politician – shift the meaning of your life’s story to focus on what you really need them to hear. None of it is untrue; it’s just not everything. It’s the hard parts pulled out of context.

But when the evaluators are gone, you do your best to silence those fears and anxieties and get back to encouraging and celebrating the positive. Because that’s what your child needs most. What I must do as a parent, though, is not the same as what I hope to do as a writer: preserve, record and share my experiences, the good and the bad.

Recently, I stumbled across some brave, uncensored posts from fellow special needs parent-bloggers that dared to give a glimpse of the dark side [Like this one, at Lexistential, formerly Mostly True Stuff]. I recognize these stories. I appreciate their honesty. Admitting that stress and worry and exhaustion can sometimes break you – that doesn’t make you a bad parent. It brings you one step closer to making this life better for your children and for yourself. These parents inspire me, and I hope to also find ways to write about the tough moments.

But for now, I am more inclined to sprinkle the dark within the light, to provide a bit context. To cast the high points in greater brilliance by just hinting that the lows are pretty damn low sometimes.

See, I could tell you about my kid’s first therapeutic riding lesson last week. Describe how excited he was to go “see the horses” when he didn’t even know what we were going to do. How his new instructor was so incredibly intuitive and supportive from the very first instant she met him. How my son approached a horse for the first time with enthusiasm and confidence….as if he’s ridden one his entire life.

But that story is just a sweet tale that any proud parent could tell.

That horseback riding lesson means so much more to me within the context of this moment, three days later, when my son has been crying and inconsolable off and on for hours, for no reason that I can see, for no reason that he can explain. It means more to me because of all the other times when introducing him to an unfamiliar activity backfired. In our life today, disappointment travels with us at arms-length. It only takes one small but brutally swift misstep to find ourselves walking on a different path, telling a very different story.

In this context, the fact that this child could not just tolerate but truly shine in a half-hour lesson on the back of a horse? That he could try and succeed at something that he has never done before with ease and grace?

It is absolutely mind-blowing.

Happy trails…


  1. Wendy Rosen · September 15, 2012

    My heart swells while reading this. You are an amazing mother, writer, and person. Thank you for opening your heart and sharing a window into your (and your son’s) world! I think that any parent has these moments of wanting to celebrate the positive juxtaposed with those times that we are truly at a loss for how to respond/provide comfort/set boundaries/etc.The difference as I see it is that you have an amazing ability to see your son’s “quirkiness” as a gift that truly helps you celebrate the positive.

    As always you are an inspiration to me as a mother!

    Sending virtual hugs to you!

    • stayquirkymyfriends · September 16, 2012

      and a virtual hug back to you 🙂 Thanks — this was a tough one to write, and I’m glad people have responded so well to it!

  2. james lavoie · September 16, 2012

    I just read this weeks blog and I have to say it was beautifull ,though sad in its reality.I look forward to all your stay quirky blogs ,Gives me a better understanding of my grandson. I think B. is blessed with a wonderful set of parents and a mom that is a very talented writer . jim

    • stayquirkymyfriends · September 16, 2012

      Thanks, I appreciate that so much. One of these days, hopefully, you can come to his horseback riding lesson and see how much he loves it!

  3. Darcy · September 16, 2012

    This is my favorite post you’ve written so far! Not solving all the world’s problems, it just IS. And I love it. LOVELY! And BTW, go B on the horseback riding! Glad he is enjoying it! Miss you guys! xoxoxo

    • stayquirkymyfriends · September 16, 2012

      Miss you, too…ah, so much! And, wow, thanks, that’s really nice to hear. Hope to see you blogging again soon too, yes?

  4. ramblings of an average guy · September 18, 2012

    I always wait for your next entry. Always such a great, thoughtful read!

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