What I would do differently could I return to my early years as a parent of a child with special needs has not been learned because of his rare condition so much as it has been honed and polished by the maturation of the process of aging.
Let me be specific, I felt entitled to have children blessed by personality, intellect and talent in some area of their choosing. I would not have worn my pride as a parent in a braggartly way (no not a word), but rather in the manner of a smile a parent spontaneously produces when a child locks onto our heart. This one is so unique, this one so curious, this one so loud? Ah, this one will push for different developmental milestones.
Having raised two children from the get-go, another from the age of eight, and having met our fourth child when he was out of high school, I admit my parental processes and choices had less impact on their paths and capacities than my ego desired. But parenting is not of hubris, but of heart. Circling back on the question of what I would do in addition to or in place of what I have done as a parent?
Spend more time.
I would, if I could, go back and spend more time engaged with each child individually, and collectively at the dinner table and on family adventures on their terms and on mine. I would have played more video games and watched sports with our oldest Ryan. I would have cuddled more on the couch and spent afternoons in Lynnell’s room where she preferred to be after school. I would have hung out while Davis had his many therapies, rather than run errands in an effort to be efficient. I would have come to know our newest son David after he found Rick, his biological father, on his own turf, not just on ours when he visited us. I would have met his friends, his family there, and celebrate the expansion of our circle with the truer knowledge of who this young man was.
What I would do different is about time, a finite commodity. Even as a special needs parent, I would park the panic and contribute what I could to my son’s potential development without the guilt that I should do more, be more when in fact it is simply about being present. All a child asks of a parent is to see them, absorb their spirit, celebrate their inner soul.
What wisdom I did gain as a parent of a boy with the Phelan-McDermid Syndrome, the thirty-third child in the world to receive a diagnosis of a deletion on his twenty-second chromosome, is that it is enough to watch Davis light up when someone he enjoys enters his orbit. He loves without condition, accepts us all without terms. He surrenders and settles in with whatever compromises life throws his way.
Yes the process of aging has taught me this as well, but as a special needs parent I have had the unique option of gaining this awareness sooner, without the wrinkles of time because these simple souls beckon us to sit beside them in the stillness of the moment from the time they enter our world, our hearts.
The Thirty-Third Child 