This Little Light of Mine

March 21 was World Down Syndrome Awareness Day. The date encapsulates the syndrome itself: 3 copies of the 21st chromosome. Hence 3.21 marks the day of awareness.

But our family missed it all together.

Angela reminded us in the family group chat the following morning. She was a day late but at least she remembered. To be honest, I’ve been in a basketball coma the past two weeks. My dad was visiting at the start of the men’s NCAA basketball tournament. We cheered on Notre Dame in the First Four, enjoyed watching the Irish finally beat Alabama in a sport, and then hung on Duke’s every move.

We sacrificed sleep for the great story lines of the tournament. Seriously, how can you not fall in love with the St. Peter Peacocks from Jersey City whose gym is named the Run Baby Run Arena and seats 3,000? Which is the entire student population at this Jesuit college.

So I missed Becky’s day. But during the tournament, a commercial aired which captured my heart. Jersey Mike’s ran these ads ahead of their massive national promotion on March 30. On this day, they will donate 100% of the day’s sales, not just profits, to the Special Olympics. That’s a great deal: you get a meal and Special Olympics gets the money. Johnny is thrilled. He told his teacher that we have to eat sandwiches because Becky has Down syndrome.

Here’s the ad. Try to watch it without crying.

Do you know what gets me?

The walking.

Just watching the woman walk into the gym.

I’m a puddle.

Before Becky came into our lives, I never knew that it could be so hard for some people to walk. When we learned about her diagnosis, we were told that she would have low muscle tone. I naively thought this would mean she could do the splits. I had no understanding that this would affect everything: her breathing, her eating, her ability to poop, to sit, to stand, to walk. On and on and on.

I’ve shared this picture before, but this is what low muscle tone looks like in a newborn.

And this is what it looks like now. This is how Becky sleeps, legs fully outstretched, folded in half from the hips, as she occasionally sucks on her toes. Ouch.

She will always have low muscle tone. Her various therapies work to improve muscle strength. She is at least 6 months behind on all gross motor skills. Becky has just recently started crawling. Her physical ability finally matches her cognitive drive: when we put her on the floor, she goes straight for Rudy’s water bowl. She will walk one day but it takes a long, long time for that strength to manifest itself. And she needs equipment to help her.

Orthotics.

An abdominal binder and hip helpers.

A stander and SPIO vest.

All of this equipment, alongside hours and hours of therapy, for something that I can literally do in my sleep.

So that’s why I cry when I see this commercial. Because I now understand what it took for this woman to merely walk into the gym and onto a gymnastics mat.

Sometimes I find myself dreaming of Becky’s future. And this Jersey Mike’s commercial got me thinking about the Special Olympics. I don’t know much about the logistics of the events but I understand the general idea. We love sports, so naturally I imagine that Becky is going to as well. And if she is going to play sports, we may as well go to the big show. Plus some members of my extended family have made commitments to future Becky.

Case in point: my brother John.

He has already promised to hitch his smoker to his truck and pull it to Becky’s competitions. Never mind that we live 1000 miles apart, he’s already planning a road trip. Perhaps we will be the only family that tailgates at the Special Olympics. Our family is big. We are loud. And we travel. There will be a fabulous party: music, dancing, t-shirts, balloons. And food.

The SPX500 Southern Pride Smoker can cook 500 pounds of meat. At once. It can handle 75 racks of ribs or hundreds of hotdogs and sausages. Which should be enough to feed a crowd and generate some leftovers. I can just imagine Uncle John pulling into a choice parking space outside the Special Olympics venue, setting things up, and kicking back with some country music.

Once we are stuffed with ribs and slaw, Team Becky will take our place in the stands. Personally, I will start cheering as soon as Becky walks onto the floor. Or the field. Or the pool deck. That will be a gold medal performance in my book.

Every day Becky works on the standing and the walking. Uncle John waits in the wings with the smoker. And while I dream of the bright lights of the Special Olympics, I’ll enjoy a Jersey Mike’s sub on March 30th.

8 thoughts on “This Little Light of Mine

  1. Beloved Becky will have a hige fan base. Can’t wait. I can sew her uniform/performance outfit? Sylvie can do the makeup.

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  2. The realization of how simple yet complex things like walking and talking are always gets me too after my mom’s TBI. She’s just learning how to walk/talk again. It’s a king journey but I know Becky will make huge strides as well and I’m excited to meet her one day!! :)❤️❤️❤️

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  3. […] I allowed myself to dream for a moment. And I wanted to tell Johnny that if he ever finds himself on the mound at Wrigley Field, or in any other MLB stadium, that we, and probably anyone who has ever known us, are either going to be in the stands or out in the parking lot. Where Uncle John will be throwing down an epic tailgate. […]

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