Bright sun penetrated the room waking me before both alarm and children—only summer can do that. It was the first day both kids had a break in full summer programming; I looked forward with both excitement and trepidation to the day ahead. My heart longed for the lazy haze filled days of the summer of my memory—no schedule, no obligation. My mind battled the desire for the logic defying Insta-perfect pictorial squares of trips to the beach, water balloon fights, sticky-sweet popsicle hands against bathing suited bellies, and freckled-faced grins enjoying watermelon in the sun.
None of that is our reality. Our days are filled with extended school year services, Orton-Gillingham tutoring, various therapies, all dotted with highly structured summer activities when possible. Rare-disease, autism, dyslexia, and the like robbed us of the summer of my childhood memories. Skinned knees and bike rides, sun burns and hot sand, cool-air museums and humid fresh-air concerts, firework explosions of color and sound lived where danger and safety, relaxation and boredom were balanced and learned without schedule and without consequence; because that is the stuff of childhood summers—the work of it all.
I grieved in the morning light for what we both lost. When parenting the rare and extraordinary one grieves in triplicate—for what the child endures, for the loss of the child one imagined long before the child of reality was knitted into existence and delivered into one’s arms, and for one’s self. The breeze of summer air blew in the window already heavy with dew and pressed on my chest laden with the threesome of grief. Nothing brings it out for me more than summer.
I heard the stirrings of children in the rooms across the hall. I wanted so badly for this day to encompass the freedom for them to explore and us to adventure—for the bright day to take us where it may and for us to simply breathe. But, for our family there is danger in that. The lack of routine and schedule feels like a free fall to our sweet and anxious, rare beauty; like a delicate flower she only thrives in the most planfully balanced of soils. Our twice-exceptional guy can hang with a lot more ambiguity; he is also the most loving of empaths with his own fragile nature that can be thrown asunder by his sister’s mercurial moods.
When hope and dread play like the unnatural pair of fox and hound chasing round my mind and belly, the trained and cultivated nature of dread, like hound, snuffs out the wild nature of hope, like fox, offering it up for slaughter. Dread was tempered by the morning snuggles, though even that is technically part of our daily routine. I drank in the soft skin and pudgy fingers that would soon be transitioning to the more slender bodies and lanky fingers of middle childhood, tiny morning giggles, and the pleasantness that only a new beginning can bring.
Dread crept back in when snuggles segued into medication time—a reminder of our reality and that I really had no plan. To have no plan as a mother to special needs children, to a child with autism, is like a traveler crossing the desert with no water. The fox of hope playfully reappeared and I clung to that; plans would wait. Medicine first, then plans—the first, then language of therapy so necessary in our home etched into the architecture of my mind.
That morning I was the Queen in Alice in Wonderland with such range that “Why, sometimes I’ve believed as many as six impossible things before breakfast” and ran the full gamut of parenting emotions. Cereal clanked in bowls and pills were swallowed. Still no plans. The day would not be completely free of therapies. Like God we only take one day off out of seven. Applied behavioral analysis (ABA) therapy was the only one on the docket for the evening to support dinner routine; still the full day lay ahead like the long stretch of the earth’s orbit during sunny summer.
I questioned whether I was robbing them of something with all this—only the Sabbath off, the first/then scheduled routine, the therapies—because grief and dread swept up a deep longing and today I wanted a day from my childhood. Coffee, with its earthen smooth bitterness had a way of grounding me, and thankfully, as I drank in its warmth I found my balance. I heard them swashbuckling in the playroom. First/then would wait.
This is their childhood. It is not Insta-perfect, nor is it the 80s pool-dunked, bike riding adventures of my youth. Their programming provides them what they need to grow and growing is done year round. For us that means extended school years dotted with short jaunts to the pool, ice cream cones in the parking lot at occupational therapy, barbecues and backyards with therapists in tow. It is the work of it all. And, that would be our day.
That evening as I loaded hotdogs on the plates of the neighborhood kids around our picnic table who we slowly collected over the day our ABA therapist sat nearby. Chalk and Orbeez littered the driveway, an iPad and a timer sat nearby, dirt streaked their faces, and they went to bed tired. That is the stuff of their childhood summer. My grief subsided and I retired that night thinking how very lucky I am that so many more than “six impossible things” occur every day; how very lucky I am to be their mother. And, I mused, I had a delicious summer day.