Editor’s note: This op-ed is by award-winning journalist Telly Halkias. It first appeared in the Bennington Banner.
Sometimes, for better or worse, I just can’t shake the effects of a story I’ve written, particularly during the holidays, when family ties are at a premium.
Recently, while looking out at the gray woods behind my house and wondering if we’d have a white Christmas, I recalled working on an article several years ago on K., a teenager suffering from cerebral palsy. He had received recognition for his art painting by a national nonprofit aiding disabled children and their families, and I took the assignment to cover the story.
The family is where my thoughts settled after I finished the interviews and writing. K.’s parents, R. and D., led busy professional lives while also caring for their son. They already had raised two children, both adults.
But K. presented a challenge unlike any other child. Just as there is much assistance for living with special needs, there are many requirements, too. These are difficult to describe, and go far past the obvious factors of money, time, equipment and education.
I say this as the father of a high-functioning son with Asperger syndrome, who at 25 still wrestles with his place in society. While competent and quasi-independent, he will never be like the rest of us. In recalling where my child was years ago, and where he still needs to go, I kept that in mind when meeting K.’s parents.
Their overarching sentiment, at least outwardly, was one of optimism. R. gushed over K.’s art. In the background I heard D. pounding out details of her son’s developmental plan with a special education teacher.
This dichotomy seemed awkward, yet helped me understand how they had dealt with the challenges of a child whose outlook was hopeful and limited. K.’s father and mother complemented each other: R. effusive but realistic and D. cautious yet optimistic. D. admitted their approach was day-by-day. In her son’s case — and the family’s — any discussion of a long term future had to be tempered.
I wonder about K. and his parents even now, years later, because it’s a view of disabled kids the public doesn’t often get to see. Parents are human too. They get tired. They get frustrated. They feel guilty when both of those things happen. It’s hard enough to raise children. But when dealing with special needs, you have to condition yourself to regular gut-checks or eventually go insane.
To that end I’d never imagine to speak for the boy’s parents. They needed respite help, and were getting some, even if in small portions. From my own experience, though, I spent many sleepless nights wondering what I could have done different to make my son’s life even one bit easier. If not always demoralizing, it was certainly exhausting.
However trite it sounds, whatever the level of disability, life will never be easy for these kids. Nor, as hard as they try, is it a normal time for the parents. At best, it’s a simulation of normalcy; at worst, it’s something that can’t be labeled.
What remains vivid from my short time with them is that K.’s mother and father were fueled by a love born in gratitude far deeper than any celebration such as Christmas could ever express. However fervent our grasp of the holiday’s true spirit, it can’t touch the love for one’s child.
And when that child, like K., has conditions thrust upon him at birth over which he had no control, nothing can be more genuine — whether in joy or frustration — than his parents reaching out year after year, as if from the cradle.
After all, it’s not always snow that makes a white Christmas.
