Unimaginable: Keeping Sons and Daughters with Disabilities Safe During a Crisis

Gus and Beth.

Gus and Beth

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 who were escaping their homes in Kharkiv to safety in Poland. The city of Kharkiv was one of the first targeted in the Russian invasion.

My heart went out to them 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 a 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 their first trip outside of a bomb shelter since the Russian invasion began. He says, “Shells were falling close by and the noise sparked terror in the children.”

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, my husband Mike and I grew older. And weaker. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. Mike and I 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.


 

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    The adventure began with automobile drives through the devastated city of Kharkiv to the railway station, followed by a train ride from east to west to the bus stop.


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