The Inner Light - Families of Children with Disabilities

The phone rings, and there is a hushed, almost timid voice at the other end, requesting some assistance, as these voices usually do when they get me on the line. By the time this woman finishes the description of her needs, a tremor sneaks its way into her melodic speech. “Let's see what we can do,” I tell her, and ask her to stop by on Thursday around six.

Thursday evening rolls around, and at 6 o'clock sharp, the phone rings again. This time, her voice appears strained, exhausted, nearly pleading: “We are at the back gate, and I can't quite get in. Can you come help us?” I grab my office keys and dash out of the portable office to make my way around our main building – the grand, stately, vintage type so typical for this area of the Pacific Northwest – to see a wisp of dark hair peeking over the tall wooden gate. When I yank it open, I discover the bony behind of child, slung over the shoulder of his mom, the owner of the wisp of dark hair and the timid, strained voice. We fumble our way through introductions, and I usher her to follow me into my humble, cluttered office, wondering how this petite, not even 5-foot tall woman will make her way through the insanely tall grass, carrying this child. She doesn't stumble or complain once, nearly effortlessly climbs our rickety stairs, and gratefully slumps into the lumpy couch I offer her.

When she lowers his little but not-so-little body gingerly onto the floor, the evening light suddenly fills the room and hugs this small being with warm, glowing colors. He is now flat on his back, pressing his curved spine into the old, fuzzy office carpet; his slender feet are eagerly exploring the space around him; and his hands, like excited birds, are reaching for his glasses, his mother's face, my hair, the sunset rays painting this tight room. And then, with a twinkle in his infantile yet aged, knowing eyes, with his wide, crooked-teeth smile, and with the bubbly kiss he blows me silently by touching both hands to his lips, Danny reaches for my heart …. and he takes full hold of it, with his entire being.

In an instant, he proves to me that it is always a good idea to pick up the phone and reassure those faint voices and to arrange evening meetings for tired, needy parents to be able to bring their children along; he shows me that such appointments might, on the outside, be about an insufficient diaper supply, a desperate search for a qualified caregiver and an even more desperate search to pay for the services of that caregiver, a request to seek alternative medical assessments, ways to pay for heating bills, or solutions to seemingly insurmountable issues of inclusion and non-inclusion in our society. But sometimes, quite frequently, in fact, these encounters are about reaching out and about being touched.

Danny, you see, is disabled. He is five years old now, weighs barely 30 pounds, receives the majority of his nutrients through a feeding tube, and he will, most likely, never walk or speak. His immune system is shattered, and his mom knows the names of all local ER doctors, as well as those of specialists and pediatricians at Children's Hospital by heart. She can rattle off the dozen or so medications and dosages he has been on most recently; recite dates, locations, and outcomes of all his surgeries; dictate social security and medical ID card numbers; sternly announce to skeptical doctors in the midst of the night what exactly he needs, and all they have to do is prescribe it because …. mom knows Danny best. She can't, however, remember the last time she showered, has not made time in years to look at a painting or to breathe in the salty air of the seaside we are blessed with around here, and the only adults she has regular contact with are Danny's doctors, nurses, therapists, and special education teachers. Danny's father chose to leave his wife and child when he realized that his real son would not ever turn out how he had envisioned him.

And yet – it's okay. Danny's mom relaxes on my old couch as her son and I pass a pencil back and forth and as he continues to blow me bubbly signs of affection. She talks and nods, shares and shrugs, questions and reminisces. The forms she needs to fill out and sign are a minor inconvenience during this meeting. Neither of us has to say it, and yet we both know: this little bundle of life on the floor, radiating, is amazing. Astounding. A gift.

It goes without saying that we will meet again, using one formality or another as an excuse to connect. Maybe, when the time is right, Danny's health stable enough, and her life in order, she can join one of our local networking meetings for parents of children with disabilities. What counts for now is that she is recharged. As am I.

And Danny's amber eyes twinkle in the setting sun as she carries him off, plowing her way through the tall grass; this tiny, giant woman, walking so tall and clutching something so fragile and yet so solid.