An Uncomplicated Life: Down syndrome and the miracle of slowing down

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The New York Times recently ran a story about the increase in the number of both parents working full-time (almost 50 percent) and how it stresses their ability to enjoy time with their kids.

Very understandable. We who have a child with a disability — and perhaps one or more kids without a disability — more than realize that strain. What’s more, we worry that we’re short-changing our “typical” kids.

Here’s a different way of looking at it. Here’s one blessing of having a special needs child:

We slow down.

We have no choice.

We wanted Jillian to do everything her older brother Kelly had done, and she did. It just took longer, whether it was tying her shoes or spelling a word or learning to ride a two-wheeler. The extra time needed forced Kerry and I to take it easy. It was fabulous.

John Lennon said, “Life is what happens when we’re busy making other plans.” The suburban bargain can be draining. We continually seek the next Next. We don’t linger. I cannot, for example, tell you what it was like when Kelly first rode his two-wheeler. He learned in an afternoon. It took Jillian two months. When I finally let go of the back of the bicycle seat, and watched her pedal her way down the lane unaided, it stuck in my heart forever.

Kelly’s first Homecoming dance. . . what did he wear? Who was his date? Was he nervous, elated, eager? No idea.

Jillian’s first? You mean after Kerry took her dress shopping (they tried on five) and after Kerry and Jillian got their nails done, and after I watched Kerry do Jillian’s makeup?

You mean when I saw Jillian at the top of the stairs, her date (and future husband) waiting in the kitchen? When I saw him side the corsage of a cymbidium orchid onto her wrist? When I saw them walk out the door to the car, arm in arm, grins wider than the ocean?

Nah. I don’t remember that at all.

It took Jillian an hour to spell the word STORE. We went through various permutations — s-t-o-e-r, s-t-o-a-r etc — until she got it. When Kelly spelled store we went on to the next word. When Jillian spelled store I got up and started dancing around the room. “S-T-O-R-E, store, store, store!!”

We reach a certain age, look back and wonder why we didn’t linger. Kerry and I are empty-nesters now. Time passes more quickly, the older we get. But we still remember to linger, whether it’s over a fine meal or an evening with family and friends or a heart-breakingly lovely sunset. Jillian taught us that. We’re grateful.

The Times story:

http://www.nytimes.com/2015/11/05/upshot/stressed-tired-rushed-a-portraiit-of-the-modern-family.html?smid=nytcore-iphone-share&smprod=nytcore-iphone

That tension is affecting American family life, Pew found. Fifty-six percent of all working parents say the balancing act is difficult, and those who do are more likely to say that parenting is tiring and stressful, and less likely to find it always enjoyable and rewarding. For example, half of those who said the work-family balance was not difficult said parenting was enjoyable all the time, compared with 36 percent of those who said balance was difficult.

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