Oma’s and Pop Pop’s Take on Down Syndrome

By Lauren Maehrlein and Thomas Dietrich (USA, Charles’s grandparents)

It is no surprise that Oma and Pop Pop remember exactly how they felt when they were told their unborn grandchild had Down syndrome and where they were when he was born. Oma’s account:

When Amy told us that her unborn baby had a heart defect, we were upset and anxious. When she said it was most likely caused by Down syndrome, we couldn’t understand how that could be possible. Amy was twenty-nine – certainly not the forty-plus-year-old mom you generally think of having a baby with Down syndrome. When the diagnosis was confirmed, we realised it was just the luck of the draw and that there would be challenges ahead. There was nothing we could do, but just wait and see. We listened for any news on his development and prayed for the best outcome possible. It was a Sunday. Tom and I were in church when I suddenly knew that Charles had been born. This was confirmed a short time later, and we were thrilled to know that he and his mom were okay. Charles needed special care because of his severe heart problems, but right then, we were just happy to know he’d arrived. Charles would never have a time when he was completely okay, medically. Before his first heart surgery, he would be given oxygen and need a feeding tube, but he really was okay! He seemed happy to be here! He was the smiliest, most joyous baby. We travelled the eight hundred miles to meet him as soon as possible. We were in love with him instantly, and, as he grew, we loved him more. We knew he would have challenges and that he faced ongoing problems, particularly because of his heart, but he was just our beloved grandson, our “Charlie boy!” As time went on, he gravitated to Pop Pop. They had a special bond early on, and to this day, he’ll talk a little to Oma, but it’s Pop that he wants to hang with. Communicating with Charles, however, has been a struggle. Too often, we don’t understand what he’s trying to tell us. It’s frustrating for us, but it must be many times more frustrating for Charles. Because we live a considerable distance away, we didn’t see him often enough to develop an ear for his speech patterns. But with a lot of patience and some family help, we manage. One of our favourite memories of Charles as a little guy was how in-tune he and his younger brother, Evan, were. They were close enough in age (ten months, twentyeight days apart) to have an almost twin-like connection and little Evan, even at two years old, often was Charles’s voice. The symbiosis continued through their childhood. When Charles started

We were in love with him school, we were unsure how far instantly, and, as he grew, we he could go academically. We weren’t there for the day-to-day loved him more. struggles of schoolwork, but thanks to his own abilities and his parents’ dedication and love, he flourished. The big question early on was whether he could learn to read. Knowing that few opportunities would be available to him if he couldn’t, we prayed from afar that reading would not be an impossible goal. Our hopes were rewarded – Charles is a reader! Charles is a profile in courage for all of us. Despite his health problems, he perseveres. Weightlifting, bowling, swimming, driving Pop’s boat on the lake, he keeps plugging along. This last year, with its restrictions, has limited our opportunities to see Charles and for him to get out and about. Online classes have kept him in touch with school friends and teachers, but the isolation it has caused must be particularly hard on our Charles. We managed to get in a socially distanced visit in late summer as we trailered our way across the country, but it wasn’t enough. We’re looking forward to everyone being vaccinated by next summer and finally being able to gather again.

When I learnt that my yet-to-be-born second grandson had Down syndrome, I was moved almost to tears. I knew next to nothing about it, only that life for my daughter, son-in-law, first grandson and, of course, Charles was going to be different from what it would have been had Charles not had Down syndrome. It’s difficult living far from your family. Amy and Danny lived just outside of Chicago, while we and our two younger children lived just outside New York. We were young for grandparents, not yet fifty. Both still working. Retirement wasn’t even on the horizon. Fortunately, Danny’s family was nearby, so Amy and Danny weren’t completely on their own. Of course, we visited as soon as possible. My first memory of Charles is him on a blanket on the living room floor. It wasn’t hard to look past his Down syndrome, this cute baby boy lying on his back, arms and legs moving around, his head turning and checking out the world. My poor little guy also had a heart defect. He would have open-heart surgery while still an infant, and again, a few years later. That seems to have done the trick. Charles loves to do all the things that others do. I’m so thankful for the Special Olympics. Sadly, I rarely get to see him participate, because we live so far away. Even so, we have a special relationship. Charles is great with animals, especially cats; he loves to drive the boat – under intense supervision. In many ways, Charles is pretty smart; he usually figures out “computer stuff”. Charles’s Oma and I took him on a camping trip to Michigan a couple of years ago. He had a great time. We struck up a conversation with a Mennonite couple, and, as we said goodbye, Charles gave the man a big hug. I was a bit uncertain about travelling with Charles because his disability, but there weren’t any problems. Charles’s life could be so much fuller, even happier, perhaps, if only his speech could be better understood. One real heartbreaker about my Charlie Man is that he fully understands that he is “different”, and he feels any rejections deeply.

It wasn’t hard to look past his Down syndrome