Unimaginable

That’s Gus and me during a visit to his home in Wisconsin (photo by Mike Knezovich).

A BBC News story titled Chaos, upheaval and exhaustion for Ukraine’s disabled children caught my attention earlier this week. The piece was written by Fergal Keane, a BBC News reporter who rode with a bus full of children with disabilities and their caregivers escaping Kharkiv to safety in Poland.

The city of Kharkiv was one of the first targeted in the Russian invasion. My heart goes out to these children, and, especially, to their parents. I know firsthand how heart wrenching it is to realize you can no longer keep a disabled child safe at home and resolve to find a group home or facility where they can get professional care. But having to say goodbye to your disabled child to keep them safe from war? Unimaginable.

The bus had been travelling for thirty hours when Keane was writing his story. The journey started with car rides through war-torn Kharkiv to the train station, then a train ride from east to west to finally board the bus. The trip to the train station was the childrens’ first trip outside of a bomb shelter since the Russian invasion began. In his story, Keane writes that “shells were falling close by and the noise sparked terror in the children.”

Many of you regular blog readers know our son Gus was born with developmental disabilities due to a genetic condition called Trisomy 12p. Gus can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him.

Gus communicates by crawling to whatever it is he needs. He can manipulate a wheelchair, too, and when he wants to hear music, he rolls himself to the piano. Gus laughs and sings with the tunes and claps with delight whenever he hears live music.

As a child, he loved to hold hands, especially while swinging on a porch swing. But as Gus grew bigger and stronger, Mike and I grew older. And weaker. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. We placed him on waiting lists all over the country, and when a facility four hours away contacted us to tell us they had an opening, we took it.

Gus cried his entire first week away. So did we. But we knew where he was, we knew who would be taking care of him, and we can go and visit him anytime. All luxuries these parents in Ukraine likely won’t have with their disabled children.

Unimaginable.

An earlier version of this post was published at the Easterseals National blog.