The day after Cooper's birth, the doctor said Cooper had markers for Down syndrome, but he couldn't be sure of the diagnosis. After listing some physical characteristics that Cooper has, he said, "But he has really good muscle tone. Most babies born with Down syndrome do not have good muscle tone. They're usually a lot more floppy." In my head this translated to, "Cooper being born with good muscle tone means he will not struggle physically like some people with Down syndrome can." In my head, I thought this meant it would be one thing that wouldn't be so "different" about our son. One thing he wouldn't be stared at for.
But as time went on, I learned more. I read that you can't have Down syndrome without some degree of low muscle tone. I read that muscle tone is not something you can change, the way you can change your muscle strength. Muscle tone is what you are born with, and it truly varies from person to person. I started to see Cooper struggle to meet "milestones," and I realized whatever muscle tone he was showing at birth wasn't necessarily indicative of the pace at which his body would handle growing and learning to do all the physical skills that come so easily to someone who does not have low muscle tone. I felt sad for him being "behind." It seemed, at the time, that he would never accomplish whatever task we were working on. First, rolling over. Next, sitting up. Followed by crawling. Each new skill felt nearly impossible, but with time and patience and lots of cheering, Cooper did it.
Today, the physical milestone we are working very hard at is walking. Standing. Balancing. Anything to do with having Cooper up on his feet. The first few months of just trying to get him to pull up to stand felt like forever. I could see how hard he wanted to, how hard he was trying to do the things asked of him, but his body quite literally could not handle the demands.
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One of the first times I saw the gap between Cooper and other kids his age was at a local basketball game we attended. Cooper was a little over a year old and still working on crawling. We walked into the foyer, paid for our tickets, and headed toward the gym. At the gym entrance, we were greeted by a young woman who was recruiting babies to be in a "crawling contest" at halftime. She asked if I wanted to enter my baby. The question surprised me, and I wasn't sure how to respond. Doesn't she know he has Down syndrome? On one hand, I felt glad she's not shying away from him. On the other, I felt slighted- like can't a mom have a little respect for the differences her child has? I stood there for a moment with my mouth open trying to decide what to say. Should I explain to her that my baby has Down syndrome and can't crawl yet? Should I try to educate her on the differences between a typical baby and a baby like mine? I felt a little sting hit my heart as I thought about the fact that she has just highlighted for me the truth- my 14 month old cannot crawl yet.
I decided to keep it simple. I smiled and said, "No, thank you." We continued to the gym to find seats. It felt like my heart might jump out of my chest. My brain might explode from the mental battle it just fought. My eyes might start leaking from the turmoil I was feeling inside.
The halftime baby contest comes. I see babies smaller and obviously younger than Cooper crawling across the floor. I see other babies who just sit down and cry. I expected to feel sad, to have to fight back tears knowing my son could not participate. But I'm surprised to find that I don't feel sad. As I watched the babies, I realized that each child is different. I looked down at Cooper sitting in my lap. He smiled at me and, instead of sad tears over his "lack of progress," tears of joy start to fall. I felt so happy for how hard he tries and for what he is able to do. For the first time, I stomped out the comparison bug. I learned I don't have to look at other kids. I learned Cooper is doing just fine where he's at.
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Cooper is now 20 months old, and he has a walker. The patience and grit this child has shown me is priceless. He continues to work at walking and tries hard every single day. Sometimes with a lot of enthusiasm, other times with very little. To try and motivate him more, today I took him to the park. It was finally cool enough to be outside for an extended period without me worrying about him overheating.
We were clearly a spectacle- me carrying my child on one hip and his walker in the hand opposite, big sister running ahead of us. I put the walker down and got Cooper set up somewhere I thought he might be motivated to walk around and explore. He took off like I've never seen, only trying to get down once or twice. He watched and studied all the kids in the area. He worked hard to carefully maneuver his walker toward ropes, ladders, stumps, anything that was at his height and he could touch and try to play with. It was magical for me as much as it was for him.
Just before we had to leave, we crossed paths with a small boy. He was only slightly taller than Cooper, so I guessed they were close in age. The boy came up to Cooper and stared. I didn't figure he'd seen a walker before so he wanted a closer look. They stood face to face for a moment, then Cooper took off and almost ran over his shoeless toes. They boy stepped back just in time and took a couple steps behind Cooper, following him. It looked as though the boy might try to push the walker from behind, but instead he stopped and started clapping. "Oh, look Cooper," I said, "he is cheering you on!"
The exchange was short, only a minute or two. It would have been easily missed by most people. Cooper continued to slowly walk away from the boy and I followed him. The sentence I had just said out loud hit me again. "He is cheering you on." I started crying. It had been such an unexpected moment. For whatever reason, this boy felt like clapping for my son. For my boy who works and tries so hard to accomplish things that I used to see as ordinary. This random boy on the playground saw worth in my son, and that means absolutely everything.
To the parents of that boy, thank you for raising a good human. I've learned a lot about what muscle tone looks like and the impact it can have on Cooper, but I've learned even more about what good humans look like and the impact they can have on Cooper and on our entire family. Good humans lift us up when we need it. They are curious and thoughtful in kind ways. They encourage us and want to see us succeed. They love us.
Good humans can change the world.
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