Past, Present, Future: My Heart Beats (and Breaks) in All of Them

I’ve had a hard time lately writing about sensory processing disorder (SPD). It’s partly because my kids are getting older. Who am I to write about their challenges because it helps me feel better or aids other families going down a similar path? It’s not fair for me to make that choice for them. Even when I try in earnest to write about me – about my journey and my story as a mother of children with sensory differences – I inevitably expose my kids’ vulnerabilities in small (and sometimes big) ways. I knew the day would come when writing a “mommy blog” in any capacity would become tricky. I’ve found ways around it, and I dare say it’s made me a better writer, but it’s an ongoing struggle with any topic. With SPD, it’s nearly impossible.

But my recent writer’s block isn’t just about my kids and their privacy. It’s about my relationship with SPD. It’s never been a healthy one, because who the hell wants SPD in their lives, but recently it has become toxic. SPD demands so much, but it never gives anything in return. I’m angry at it. I’m exhausted from it. It makes me feel insecure and clumsy. It’s strips me of my confidence. It tricks me into thinking everything fine and then it pulls the rug out from under me. It’s not a good friend.

I think about SPD as resting on a time continuum. It has a past, a present, and a future. The past is relief. Its edges have softened. There are scars, but the bites sting less. The present is a panic attack. It’s screaming with my arms flapping instead of putting on a life jacket. It’s admitting that this too shall not pass. The future is the weight of an elephant on my chest. It’s dread. It’s admitting that the bittersweet realization that our babies do indeed grow up has nothing on the recognition that the challenges that plague them today will stay with them for a lifetime. I’m always standing in one place on the continuum, but my heart beats (and breaks) in all of them.

Not too long ago, I listened to an interview with Brené Brown on Elizabeth Gilbert’s “Magic Lessons” podcast while on a walk with my dog. The episode was about sharing personal stories. It was a lovely discussion between two creative women I admire greatly about owning personal stories and having the courage to share them with great care. About halfway through the podcast, Brown said something that stopped me in my tracks. She said the only personal stories she shared with the public were stories that she had “really processed.” She said her litmus test for sharing a personal story is if “my healing is not contingent on your opinion of those stories.”

Out of nowhere, I cried big, awkward, ugly tears. I sobbed uncontrollably while strangers walked and jogged passed me. It’s hard to describe the simultaneous confusion and clarity I felt in that moment except to say that I was uncomfortably aware that I hadn’t “really processed” anything and that my wounds – past, present, and future – were fresh. Her words broke me open, and I haven’t shared a personal story about SPD in writing since then.

SPD has been my greatest hurdle as a mother. It has shaped nearly every moment I’ve had with my children, and although I would never change a thing about my complicated, dynamic, and beautiful boys, I’d give anything for our journey to be less hard. I don’t regret any of the stories I’ve shared – in fact, I’m proud of them – but I’m suddenly painfully mindful of how fragile I have become (or have always been?).

I have a great desire to give my voice to this journey that doesn’t have nearly enough of them, but I also feel a great responsibility to offer my voice in a manner that values the writer and the reader (and the subjects) equally. I don’t know where I’m headed from here, but I feel a better, caring, healthy sense of ownership about this very personal story already.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!Want to join in on next month’s Sensory Blog Hop? Click here!

Want to read more amazing posts in the January Sensory Blog Hop? Just click on this adorable little frog…