Having a Child with Down Syndrome Part I: The Weirdness

Copyright © 2009 Steve Hawley, All rights reserved.

When you get a new car, you often experience an odd change in perspective. You suddenly notice how many other cars there are on the road of the same make and model. When I drove a 1972 VW Super Beetle, I had it to the point where at a glance I could name the year of a beetle in a split second after seeing it. Freaky.

The same thing happens when you have a child with Down syndrome, but oddly different. We started noticing other families with members with DS, but started getting the oddly frequent happenings. When Alice was around 18 months old we took a vacation her E’s grandfather to return his parents ashes to France and to Switzerland. Nearly every day for 4 days running, we pretty much bumped into another family with a child with DS or some other coincidence. I was calming Alice down in the stroller in a small courtyard and ended up in a conversation with a couple. The man’s dad was a leading doctor at a clinic for children with DS.

As an aside, many thanks to my high school French teacher, Geri Desapio, who made the ensuing conversations possible, although I never learned the word for diaper in French, and couldn’t believe that I had to ask, “Excusez-moi, mais ou se trouve l’ecreme foufoune?” (excuse me, but where is the butt cream?).

For other parents, we have learned there is a “ah, you’re in the secret club” look. A slight nod of recognition. Sometimes it’s a short conversation – I saw a young man with DS wearing a Bruins shirt in a restaurant with his dad. I thought he had been to the semi annual fund raiser the MDSC does wherein retired Boston Bruins play hockey against a team of MDSC All Stars. This was not the case but his dad finished the conversation with “hear my words now, and believe them in 20 years – this is the most rewarding thing you’ll ever do”.

A month back, I went to visit my mom and on the way back, I pulled into a rest area – I nearly didn’t – it was a “do I really*need* a bathroom break and dinner?” dilemma. At the last minute I chose to. I saw a 25ish man with DS walking with his dad. The young man wasn’t high functioning. I saw a look of utter dedication on his father’s face, one I had seen on my own. I pulled out my phone and pulled up a picture of Alice and told him just that. He didn’t speak English. Oops. I don’t speak Spanish. Oops. He grabbed a coworker who acted as a translator. Thank yous on both sides.

This is not the strange part. Often times, I will take Alice out on “dates”. It’s a way to spend some quiet quality time with her. I usually have another purpose: errand, shopping, etc, but we will spend time together and do something special. Under these circumstances, I’ve had people – strangers – come up to me and say really odd things. One of the ones that stands out is a man who walked by us in the food court of the mall and said, “God bless you for all the hard work you do” and walked on with nary another word. How truly odd. And that wasn’t the oddest.

The coincidences go on and on.

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