The Joy of Watching My Son With Down Syndrome and His Brother Reconnect

“Here’s what I want.”

“Huh?”

“First, errands in the car.”

“Uh.”

“Then chips and salsa in the studio.”

“Uh-huh.”

“Hot tub time.”

“All right.”

“And grilling burgers.”

“Let me drink my coffee first.”

“OK.”

Organizing the art studio, I overheard my sons’ conversation as Charlie carried a morning cup of coffee to his brother, William. At 29 and 27, Charlie and William have rediscovered the sibling bond that made them inseparable as toddlers and preschoolers. And today their loving adult relationship often brings me close to tears, as their re-discovery of each other has been a renaissance of their joyful childhood days laughing, teasing and yes, even roughhousing.

Well, provided Will has had a cup of coffee or two.

Many years ago, visiting Charlie’s geneticist after Will was born, I was told that his new baby brother would be the best early intervention tool we could provide for Charlie. And the doctor was completely right. Only 21 months apart, Charlie and William spent the first half dozen years of their lives as true BFFs. Their relationship encouraged Charlie physically, cognitively and emotionally.

As the boys grew, my husband and I waited anxiously for the day that William would seek out his peers more frequently than his brother, and of course, that day came. And those days turned into years. And that super-close childhood bond loosened, as sibling relationships can.

Until COVID-19 hit.

William was working overseas and returned home to shelter with us and take up residence in the guest space above Charlie’s art studio. Like many empty-nesters during this pandemic, we have found our nest full again. And watching this new sibling dynamic has brought us joy, along with guilt. After all, this is a pandemic and people are sick and dying, losing their jobs and livelihoods, unable to feed their families, leave their homes, isolated and struggling. How is it in any way fair that we can find anything positive in our lives right now?

It’s not fair. And it’s not right. But out of this challenge we have seen our boys reconnect in a way I am not sure they ever would have. And I am so very grateful for the opportunity to watch this reconnection. For the two of them, but also for myself.

As we age with our adult children with disabilities there is that nagging fear of what happens after we are gone. No matter how much we plan for that time, the worry is still there, an annoying voice of OMG, will Charlie really be OK?

And while I know today, and knew before the pandemic, that Charlie’s siblings would always be a part of his life, now I know that their deep connection has nothing to do with my presence, my planning or my nagging. The joy they find in each other does not need me in any way. William won’t be there for Charlie because he feels he has to be, he will be there because he wants to be, and Charlie will welcome him.

COVID is not a blessing. This pandemic is not a good thing. So, it is simply astounding to see anything positive emerge from this time. But I do. I see my adult baby boys laughing hysterically as they play Cards Against Humanity. I see them driving off with sunglasses on, windows down and Disney songs blaring. And I see them holding each other tightly, neither quite wanting to let go, as they hug goodnight.

And for that I am grateful.