October 11, 2011
The Thin Red Line
Justin opens his mouth in a wordless “o” of half-terror, half-excitement, then plunges a body length toward the boardwalk, as usual enraptured by his favorite ride. I smile and enact my “usual”, which is to capture that moment of abject fright coupled with fun on film, because he’ll enjoy it later when I play these moments back for him on camera. The ride has just begun, so I allow myself the luxury of relaxing just a bit, knowing he’ll be engaged for several minutes, as the amusements at this particular boardwalk are actually worth the wait.
I take a step backwards and feel my sneaker crunch what can only be someone else’s toes, and I quickly turn to offer my apologies. Thankfully, my victim is also wearing sneakers rather than more traditional summer fare, and she simply smiles and says “Don’t worry about it.” I see her hesitate for a second which intrigues me, so I keep my torso turned in her direction, and she follows up with a second question. “Is that your boy on the end?” she asks. I say yes, and she responds with “mine’s on the other end”. I turn back to where my son is being flung around like a jack-hammer, and see a little boy with Down’s Syndrome four seats down from Justin, clearly as immersed in the excitement as my boy.
I consider anyone with a child who’s differently-abled to be part of my “tribe”, so I take a step back and strike up a conversation with her. I tell her her son is beautiful, and she kindly returns the compliment. With only a minute or two left in the ride we conduct a typical abbreviated dialogue- diagnosis, residence, how our school districts are providing for our kids, and sibling status. It turns out she has an older daughter who adores her son and is a big helper, and I share with her that I have a younger son who is also on the autism spectrum, but mildly so.
She looks at me, this woman with her own Herculean challenges, and says quietly, “Two? Wow. I have my hands full with just one. I don’t know how you do it”. I reply that wine and getting out of the house once in a while are my biggest helpers, and she laughs as we both watch the blurred row of seats begin its final descent. Justin can lift himself off now independently, so I say good-bye to my newfound friend, wish her luck, and grab my son’s hand before he’s en route to his next thrill-filled destination. It appears our subsequent adventure will be the tilt-o-whirl, which is wonderful for Justin, and not so good for his mommy. I am already regretting having eaten prior to coming here.
We successfully survive what I’ve lovingly come to call “the twirling cups of queasiness”, and Justin lets me know that he’s done for the day by yanking on my hand and striking out in the direction of his waiting stroller. He’s certain he’ll be the imminent recipient of a salty pretzel within minutes, so his grip is strong, and relentless. Within seconds we’re back at our staging area, the carousel, and he is soon sitting calmly in his own personal ride. We acquire our carbohydrates, his doughy, twisted bread and my staple of soft-serve, and then continue with our tradition, which includes a stroll down to the end of the boardwalk and back.
I love these walks, because along with rides in the car they seem to be one of the few moments in my life where I get time to truly process anything. I let my mind wander back to my conversation with my “tribe-member”, and her heart-felt query as to how I make it through the day. My comment involving the merits of alcohol and frequent bouts of “Mommy-time” was somewhat glib, but also true, particularly the latter remedy. We all need to take care of ourselves so we can take care of our kids, and for me, that includes time alone, even if it’s just running errands. Some of my best ideas have been born from those moments of sanity, where nobody is stretching out my shirt-sleeve with their wants. I admit, to me, it’s precious.
I also admit there are other reasons why I’m usually able to do more than just get through the day, although I’m grateful for that ability too. If I’d had more time, I’d have told this woman that my eldest son’s bravery when he attempts to talk continues to take my breath away. I’d explain to her that my youngest son’s compassion for his sibling’s struggles at communication makes my heart overflow with pride. I’d share with her that my sons’ collective courage in all of their endeavors is a tremendous inspiration to me, that their spirit makes me strive to do better for them, to parent them to the best of my capacity. I’d regale her with all of these examples, and they’d be true. There’s one other important reason I might leave out however, because you really need a visual for it, and it’s something Justin won’t produce on command.
I call it, lovingly, the thin red line.
The thin red line is his special smile, the one he saves for particularly spectacular days, the ones that exceed even his exceedingly high expectations. Its appearance is rare, and therefore even more coveted. It is usually preceded by a mighty hug and kiss of thanks from my boy, includes perfect eye contact, and looks like this:
Those perfectly pursed lips signify a blessed absence of angst, a true sign that fun is interwoven indelibly throughout his days. That look on his face indicates that despite some limitations, he is thoroughly enjoying his childhood. It means that all those years we struggled, both independently and together, have ultimately resolved themselves into his predominantly peaceful, and happy, existence.
It is a smile of utter satisfaction with his life.
A slight smile graces my own lips as I ponder these truths, and for the millionth time, I thank the universe we’ve come to this point. I am well aware there are other parents who have worked just as hard as me and my husband, parents who have not been rewarded with similar results. My boys, and perhaps this boy in particular, continually make me want to do more for them, and do more for others as well. Justin’s contentment, that emotion we’ve worked so hard to elicit, will remain that catalyst that does far more than get me out of bed in the morning. It will be a continual reminder of how fortunate this family truly has become.
Lucky, in fact, to be graced with the thin red line.