Perspective
Perspective. She’s here. And that’s enough.
You never know who’ll you end up sitting next to, or what his or her story is.
A few years ago I waited outside my oldest daughter Elaina’s gymnastics class reading a book.
I wasn’t interested in reading. The book wasn’t that good.
A mom sat next to me. Her book seemed better than mine. I asked her about it and we chatted for a few moments. She chuckled when I overheard someone mention that the gymnastics class was for experienced gymnasts. The look on my face gave away that my daughter was a beginner.
“Oh well, she’s going to have to act like she knows what she’s doing,” I said under my breath. The mom next to me laughed again. I thought she was nice.
The next week, a rainy Tuesday, my husband Sergei had a meeting so he wasn’t able to watch the other kids during Elaina’s class. So off we went: me and my three girls Elaina, Zoya and Polly.
I had a headache. Polly was fussy because she hadn’t napped. Zoya decided spur of the moment that she wanted to take gymnastics instead of ballet, so she was miffed.
We shuffled up the cement stairs and into the building. Polly straddled my hip. Her coat was unzipped and falling off, and her hair was coming out of her pony tail. It hung in her face.
The class lasted an hour, but I wasn’t about to hold Polly on my lap for the duration. We couldn’t play outside because of the rain, and the floor looked pretty dirty, well dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees.
Although she was almost two years old my daughter Polly, who was born with Down syndrome, still wasn’t walking.
Plan B was to drop Elaina off and head home. Sergei would pick her up when class let out.
The nice mom with the good book came in a few minutes after us.
“You’re the minister’s wife, right?” she asked walking up to us.
I was surprised. Most people who know that Sergei is a pastor tend to avoid the topic, as if I’m going to sit on them and pray until they accept Jesus as savior.
“Yes, how did you know?”
“I’m Sarah, Charlie’s mom.”
My mind jogged back to a right after we moved to Chicago. Sergei came home from the park with the girls and told me that he met a lady who wanted to talk to Polly.
She, too, had a child with Down syndrome. But her son had serious health issues and he passed away.
“She gave me her phone number and wants you to call her,” Sergei said when he got home.
I was scared to call but I dialed anyway.
No one answered. I left my name and number after the beep.
A few days later, Sarah called back.
Sarah and I talked about Polly for a while. I covered our history … lived in Ukraine as missionaries, had Polly there, in the NICU for three weeks, on the sixth day a blood test confirmed Down syndrome … six weeks later we were on a plane headed back to the States, primarily to care for Polly, secondarily, because we all needed the care.
We talked about Early Intervention in the area and about a few therapists she recommended. I wrote down names and numbers on a piece of scratch paper.
Then I asked her about her son.
And she began to cry.
“He had a lot of things going on. His little heart couldn’t take it all. When we found out he had Down syndrome, I told my husband that we could handle it. I knew that we would have struggles, but I didn’t consider Down syndrome was that big of a deal. But his health issues were something different, entirely.”
I listened to Charlie’s mom and thought about my life these last two years. After’s Polly’s birth and her diagnosis of Down syndrome, I grieved the child I expected hard, and for quite some time.
I did not decide to grieve. When Polly came along it’s not like there was a drum roll somewhere off in the distance. I did not proclaim, “and now, officially, I will fall apart.” It happened gradually. It was like a small cloud, quietly, most assuredly taking the place of the sun, until you are left in a shadow.
Something inside me burned to relate to Charlie’s mom.
That evening, sitting in the dinning room in the dark, I said something to this mother that still haunts me.
“It’s taken me a while to grieve Polly’s diagnosis.”
My heart sort of tipped a bit after the words were out of my mouth. I gasped.
Why would I say such a thing? This woman was actually grieving her child who was no longer with her. She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.
My family takes nightly walks around the neighborhood. I push Polly in her pink polka-dot stroller, Lainie and Zo lead the way with their brightly colored helmets, peddling as far away from me as they dare, indubitably stopping at a street corner.
Everyone healthy. Everyone OK. Everyone here.
Conviction pierced through my flesh and landed on my bones.
It is OK that I grieved. It was/is my journey and I respect that.
I’m not saying I shouldn’t have. But I am saying that I needed this perspective because it helped me to key in on what I had standing right in front of me in the form of a living, breathing, joyful, beautiful child.
I need to see what I have now, and be thankful for that.
I decided not to take health for granted.
I decided I would clap for Polly in therapy every time she puts another block in the bucket. I’ll act silly, smile and dance around when she cruises up and down the couch. I would let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading. I would not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.
After Charlie died, Sarah started a preschool in his honor called “Charlie’s Place.”
The goal of the preschool is to provide a safe learning environment for all children. Sarah’s dream was to see the preschool integrated with typically developing kids and kids with special needs, so that they could learn from each other.
**Special note: This story is a few years old, before the adoption of Evangeline, our fourth daughter also sporting an extra chromosome like Polly.
I’m excited to share that Evie attends Charlie’s Place two times a week. Every time I am there, I look at pictures of Charlie, and thank God for him and his family, and for mine. <3
**Also, the names in this story have been changed.
Other bloggers blogging 31 for 21 in honor of Down syndrome awareness month this October: