The Missing Piece (A Mom’s Perspective on Traveling with a Child with Disabilities) by Rachel Nemhauser

I just returned from visiting my family on the other side of the country and I had a really great time. I lingered over steaming coffee (not as good as Seattle’s, but good enough) and the best bagels Long Island has to offer. I caught up on family news and stories, successes and setbacks, highs and lows. I held my baby nephew for a long, cuddly time, getting my fill of his weight in my arms and his gorgeous grey eyes. I ate at my favorite restaurants, took long, winding car rides, and laughed a whole lot. Like real, hearty, belly-ache laughing. I flew home at the end of the 3 days feeling refreshed and reconnected, happily a part of a large and loving extended family.

Wait a minute – something’s not right. My annual visits aren’t usually like this. Usually I experience rushed meals, snippets of conversations, cold coffee and full body exhaustion. Hmmm. Weird. Why would this visit be different then the others? Why did this visit leave me energized and not drained, connected and not frustrated? What a puzzle…

Wait, I got it! A certain red-headed, slightly mischievous nine-year-old wasn’t there. Nate was home with his dad and brother, and I was visiting on my own.

There is nothing earth shattering about the assertion that traveling with kids is difficult, and traveling without kids is easier and more relaxing in comparison. However, when you add a child with disabilities into the traveling mix, the difference is almost incalculable. For us, visiting our family means security lines, a 6 hour plane trip, long car rides, spending a lot of time in homes that aren’t Nate-proofed, lingering meals at quiet restaurants, and well-meaning family members who don’t always understand.

Taking Nate to visit family is more than just extra work. It’s seeing him and his deficits through the eyes of people who don’t spend very much time with him. It’s explaining why he does what he does, and why we respond like we do. It’s making sure Nate’s brother gets the attention he deserves from his extended family, even when Nate seems to demand every ounce of everyone’s attention all day long. It means skipping certain outings that just won’t work for our family, or leaving early from others. It means seeing younger cousins’ development skyrocket past Nate’s, more notable because of the long separations.  At moments it can be gut-wrenching, to tell you the truth.

I was reminded this week that every once in a while I really need a trip by myself so I can connect and relax and have fun with my long-distance loved ones. Most of the time, though, when I climb aboard a plane and head east, I’ll have my mischievous red-head by my side. He’s a part of my extended family, chaos and all. He’s loved, he’s missed, and he’s needed. He’s part of what makes our family who we are, and without him there is a piece of joy missing.

Happy holidays and happy New Year! Enjoy your time with your family, wherever they are!


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