How our child with disabilities takes us where we never dreamed

My wife Rosa and I have worked in education ever since we graduated from college, which gave us summers free to travel extensively — as single people, and then together as a married couple. Rosa and I both subscribe to the philosophy that “you never take a trip, the trip takes you.” This approach led us to fresh anchovies and wine straight out of the bottle in the Cinque Terre, fresh carnitas and tortillas in the markets of Mexico City, and an after hours private tour of the Sistine Chapel in Rome. We’ve been very fortunate.

Now we try to use this same approach with parenting. We don’t take Elena places, but rather she takes us. Maybe this is the case with parents of children who don’t have disabilities as well? We simply just don’t know.

Elena and Rosa

Elena and Rosa at the Art Institute of Chicago

When Elena is home during breaks from school, it is not possible to tell her to go off and play by her self. She simply can’t. And truth is, we’re not as entertaining as her school friends are. If Elena is left in her chair, stander, or walker without someone to play with, she gets bored. And frustrated.

So Rosa and I are charged with providing productive and stimulating activities in which our daughter can fully participate. During winter, spring, and summer breaks from school, Elena takes us to — and sometimes restricts us from — places we never expected.

Some of the greatest gifts we’ve received for Elena have been memberships to the Brookfield Zoo, the Field Museum, the Morton Arboretum, and the Art Institute of Chicago. These memberships provide Elena with close encounters with majestic giraffes, journeys through Pre-Columbian South America, dog-sled demonstrations, and some of the best visual art in the world. Again, we are very fortunate.

Rosa and I agree that we visit and discover more things than we thought we would because of the things Elena “can’t” do. Without Elena, I am quite sure we would never have spent so much time watching a peaceful lion slumber in the middle of the winter at the zoo, nor would we have rediscovered our love for early 20th century Expressionist art. I know that. Nonetheless, I was overcome with a sense of melancholy over Thanksgiving break when we were rushing to the Art Institute on a dreary and rainy Saturday morning.

On trips like these we have to worry about how Elena will eat in her wheelchair. Will they have food that she can eat? Will there be enough room in a downtown restaurant to accommodate her chair? Will they mind us sitting for 90 minutes because often that’s how long it takes her to eat? I am aware that taking any 5-year-old out to lunch can be a difficult task, but outings like that are hardly ever, ever in the cards for us. Wouldn’t it be so much easier if we could just go out to lunch with our 5-year-old rather than rush home to feed her?

My melancholy was broken by my wife’s guffawing over a particularly funny remark on NPR’s Wait, Wait, Don’t Tell Me on the car radio. I shifted into first gear. We continued on our journey to the Art Institute.

It wasn’t until we parked that we realized we’d arrived at the museum just as it was opening. Hardly anyone was there. Most were still shopping in the post black Friday chaos.

We rolled through some of our familiar exhibits: early colonial Latin American Art, Contemporary American, and then found ourselves once again in French Impressionism. Sure, we’d seen Monet’s “Haystacks” a hundred times, but when I looked over at Rosa she beamed and whispered, “Look, we’re alone in a room of Monet’s! How cool is this?” I almost burst into tears.

My melancholy had left me thinking I existed in a binary world of cans and can’ts, yeses and nos. As I looked around me at six of the 25 “Haystacks” that exist in the world, I didn’t see that binary world anymore. I saw magenta, violet, lilac, grey, orange, emerald and all shades of these colors of life that I’d never experienced before.

I was all alone in a room with my daughter, wife, and Monet. Elena brought us there because of all the things she struggles with. Inasmuch as I often think about what we have lost, Elena has taken us to places we would never have been and introduced us to the most compassionate and loving people. Thanks to Elena, we’ve experienced events beyond our imagination. So yes, breaks from school can be exhausting, but I’m thankful for the time. We are indeed very fortunate.

Read Bernhard’s previous blog post about a device that helps Elena speak with her eyes.


 

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