October 13, 2012
“What do you want Justin?” I asked my eldest as he takes my hand and pulls me off my comfy couch, where I am ensconced in a warm, soft blanket fresh out of the drier, happily reading Halloween books to my youngest son. He smiles, then leads me toward the bathroom with a sense of urgency. I note that the door is locked from the outside, thwarting both his entrance and his penchant for using the small stool inside to unlock the adjacent garage door, where a veritable mecca of toys resides.
Instead of freeing the hook from its mooring I return with child in tow to the coffee table, and gesture toward his iPad. Justin looks irritated but complies, quickly pressing the buttons that will signal his desire to use the bathroom, an act which is also coupled with a look of irritation directed toward his mother. I end the torture, and grant him access. I then step back and “supervise”, since my nine-year-old has mostly mastered toilet etiquette, and one of my most important goals for him is that he become as independent as possible.
I cross the threshold only when it becomes apparent that Justin would prefer to skip the hand-washing portion of this exercise, so I gently prompt him by pointing to the sink, gesturing from my perch on the wooden seat that has survived two children. He complies, as he almost always does now with our demands, and I fully expect him to bound out of the bathroom and head back to the DVD player which has captured his interest at the moment. Instead he regards me intently, and smiles as he places his hand on my arm, staring at me to make sure I’m paying attention.
Trust me, I am. I wouldn’t miss that look for the world.
I figure that will be it, that the siren song of ET, his favorite at the moment (and eternally one of mine) will call to him, but I see him hesistate, watch him come to a decision in his mind. Rather than rescuing his errant extraterrestrial from the hands of his little brother he instead slides onto my lap, throws the full weight of his embrace around me, and turns his cheek to me.
His arms squeeze with full strength once, twice, three times, then he settles into our embrace both quiet and still, a phenomenon that occurs rarely in our home. I kiss him lightly on his cheek and hug him back, and for the millionth time in the past eight years since his diagnosis day I pose this question to the universe at large.
For my beautiful, intellingent, loving son, are we doing enough?
I want to be clear here that this query does not stem from any sense of guilt. I am well aware of what my husband and I, and perhaps to some extent Zachary, have sacrificed to get Justin to this place of contentment.
Justin attends a school that is the perfect fit for him, is instructed by teachers commited to extracting his best performance every single day. My boy has family he sees frequently, and two outside therapists whom he both adores and works diligently to please. Most of the time (and this is all any parent can ever ask for), he even gets along with his little brother.
Perhaps, most importantly, he has a steady routine he can count on, a litany of meals, activities and excursions which comprise a good day for him. For the most part Justin’s is a happy soul, a hard-won outcome for which his father and I are eternally grateful.
After having survived the “spring of Justin’s discontent” this year, his parents are particularly appreciative of his contented state.
On the surface, I know Justin’s life looks quite simple. Frankly as the years have progressed he’s shown less and less interest in staple outings which he used to love, and our family has had to adjust to the fact that often our son’s preferred reinforcement is truly just to remain in the house. His “life buffet” as I like to call it is rather limited by anyone’s standards. The truth is though that he’s happy, and as so often is the case, the only one who has to adjust to anything is me.
And again, for the millionth time, I remind myself that my idea of what consists of a full and productive existence for myself, bears no weight in regards to he life of my son.
Soon I sense a subtle shift, a lessoning of the force of his embrace, a leaning toward egress. Justin squeezes my torso one last time, gifts me with one last gaze, and bounds out of the bathroom to reclaim his treasure from reluctant hands. I am left for only a moment with my thoughts because I hear the whine of protest from both of my boys, and know it’s time to intercede. I walk into the family room and am almost bowled over by my bigger son running joyfully with DVD in hand, and I know that in this instance there will be only one child to placate.
I remind Zachary of the five million other books, toys, and art projects that remain for him, and soon we resume our spots on the couch as if nothing had happened. Zach snuggles into me, and together we siphon off the last remnants of warmth from comforting covers, and immerse myself in the latest adventures of Diego and Halloween bats.
And as I listen to Justin’s exclamations from afar, I realize for once I am content too.