This post originally appeared at www.downsyndromeprenataltesting.com
How my daughter and an ordinary day at a park made me amazed at this thing called “life.”
A couple of weeks ago, I had to be away from my family so I could present at the American College of Medical Genetics and Genomics. In addition to missing my kids, it puts all the parenting work on my wife. So, in an effort to make a little amends–and give her a break–I took the kids for a full day when I got back.
We visited the Kentucky Horse Park outside Lexington, Kentucky. If ever you want to learn about horses, this is the place to go. It is on a sprawling farm, which requires a lot of walking. In my head, I had the internal clock ticking down to when Juliet would ask for me to pick her up.
Hypotonia–low muscle tone–is one of the characteristics of Down syndrome (though not all with Trisomy 21 will have it). This makes every physical movement harder. It tends to cause flatness in the feet, looseness in the joints, and can lead to gait issues. So, walking from one end of the park to see the Hall of Champions–where Kentucky Derby champions Funny Cide & Go For Gin reside alongside 2-time Horse of the Year Cigar–to the other end for the pony rides, I fully expected to be carrying her half the way.
To both my back’s pleasant surprise and to my chest’s, which was filled with pride, Juliet walked the whole park, all day, and never once asked to be picked up. She didn’t even complain. And, in a bit of sweet karma, whereas from the Hall of Champions to the pony rides her little brother James was telling her to catch up (because she moved at her own pace), after playing vigorously on the playground, it was Juliet out front of James telling him to catch up!
Both of the kids loved the pony rides–who wouldn’t? Juliet asked the handler what her pony’s name was (“King”) and her brother’s (“Copper”) and how old each of them were. She held onto the horn of the saddle and stayed balanced as the handler led them around the ring. Again, perhaps not remarkable, until you appreciate how far she had walked, and how much small muscle tensing is required in the core to stay balanced on a horse.
At this point, had she been exhausted and wanted to leave, I would have fully understood. But, no, she had seen on the park map that there was a playground, so off we went to it. Juliet navigated the obstacles expertly. The picture at right stopped me cold. The suspended platforms require balance, timing, and a certain amount of confidence to cross. But, back-and-forth she went. And, all I could keep thinking was,
God bless you Michelle Wilder!
Michelle had been Juliet’s physical therapist in our state’s early intervention program (called “First Steps”). She had also been my twin brother’s classmate at the University of Kentucky’s PT program. Juliet was born on a Monday, which is when we learned she had Down syndrome. The next Wednesday, Michelle was at our house teaching me simple exercises to help develop Juliet’s neck strength so she could hold her head up.
During Juliet’s first two years, Michelle was at our house weekly. It was always the toughest therapy session. Unlike Ms. Jenny from Down Syndrome of Louisville, who played games with her for developmental intervention; or, the multiple OTs (we kept cycling through those for some reason) working on pincer grips and fine motor skills; or, Laura Mize having fun teaching oral-motor exercises and then sounds and words as part of speech therapy; Michelle was the “baby boot camp instructor.” Making Juliet get up in a crawling position and hold her weight; putting her on an inclined plane which forced Juliet to move her hands in front of her to keep from sliding down; having Juliet pull herself up on the stairs, and then crawl up the stairs; and then having her track along the couch in a standing position to lead Juliet to walking on her own.
There were many tears (not all just from Juliet) and some days, she was not happy at all to see Michelle’s smiling face. But now, six years after aging out of First Steps, all of that work was worth it. Here was Juliet walking, running, jumping, balancing, like a champ.
All that work with the other therapists paid off, too.
After the horse park, I took the kids to my firm’s Lexington office. En route, James was talking about the park and said,
“Daddy, you know what I didn’t like about the park?”
“Well, 1. we had to walk all that way to that place for food and it was closed when we got there; 2. I wanted to see more horses.”
Without missing a beat, Juliet asked, “What was ‘3’ James?” James said that was all, but there was Juliet hearing a numbered list, knowing 3 came next, and anticipating and being curious about what that next reason would be.
When we got to the Lexington office, Juliet turned on the charm. I enjoy having Juliet visit my colleagues because they have been incredibly generous over the years of raising money for our local parent support organization. At the office, she told my law partners about going to the “Horse park,” and “riding a pony. His name was King. He was 12. James rode Copper. He was 10.” And, then looking around their offices and asking them about their kids if she saw pictures, asking what their names were, and how their day had been going.
I share all of this for several reasons:
- Some may think none of this remarkable. They are profoundly wrong. Any parent will tell you having a kid not complain during a 4-hour visit, which included touring a museum, and then being polite and conversant with your co-workers would say that is remarkable for any kid.
- But even if Juliet’s actions aren’t worth remarking about, that cynicism overlooks the sheer amazement we all should have at simply being able to experience this life. It’s easy to take for granted the awe-inspiring thing that is life–just the simple fact that we’re all here and we get to do this thing called life. And, my daughter made me appreciate that by appreciating the simple, ordinary, even mundane things of just walking a long distance at a park.
“That’s all, Juliet.”
Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).