How a memory of a tent helps me work through my fear of disability

I have this memory of a tent.  At the time I don’t think I was aware of the word ‘disability.’

I don’t know when it happened, although I know that our family was still living on the other side of Michigan, the Detroit side, so I had to be younger than seven. It’s a fuzzy memory, more like a feeling. When I think about it everything is kind of yellow. I still feel the hot sun on my face.

My parents, brother, sister, and I were at a barbecue. I had been running all over, gorging myself on watermelon, and playing with friends. Sticky palms, sweaty back, people everywhere. I wore my bathing suit under a pair of shorts. Every once in a while I’d speed past a parent or a family friend and they would yell at me to slow down.

It was a magical day for a child. People, laughter, food, freedom.

There was a swimming hole.

Tents were erected all over the field. It was a party for the duration.

Half way through the day a woman caught my eye. She sat at a picnic table. Something about her stopped me. She was different. My breath caught on a lung. A tidal wave of fear started to swoosh in the bottom of my stomach. I looked away from her, afraid to look… wanting to look again.

I found an empty tent. Swimming no longer appealed. Hunger and thirst subsided. The cool tent provided shelter, not only from outside, but from my thoughts and feelings and fears. The navy nylon around me illuminated to a sky blue as the sun pushed through the walls.

I feared seeing the woman again.

There was something terribly wrong. She wasn’t right, and I was the only person in the world who noticed.

I refused to leave the tent

Eventually my mom and dad found me.

As a parent I can imagine how my folks felt. They attempted to coax me to rejoin the party with offerings of soda, and chips, maybe a dip together in the swimming hole. After a while, we left, my siblings pissed that their little sister ruined the fun, no one in the family really understanding why, except me.

Looking back, I can’t pin point what special needs that sweet woman had. Of course, now that I have children with Down syndrome, my mind’s eye sees her with an extra chromosome.

I’d had a few other interactions with disability in the past. And each time, I was too afraid of what I didn’t know to talk about it. Instead, I pushed my fear down, and chose to ignore the gaping questions. Why are people different? And how should I feel about it? Why does it scare me? Should it?

The adult tent

After our daughter Polly was born with Down syndrome, in many ways I was still hiding in a tent. Sure, by then I had had positive interactions with people who were different than me. Even if I didn’t quite understand special needs, I accepted their existence.

Once word got out about Polly’s diagnosis, our family received supportive emails and phone calls. I was told many things that were supposed to be encouraging. She’s an angel. They (as in individuals with Down syndrome as a collective people group) are so loving, and happy all the time.

I was told I was blessed with Polly because of my ability to handle the situation. “I can’t think of people who could do better,” someone said.

But I could. I could think of a lot of people who could raise a child with Down syndrome better. These supportive people didn’t know about the tent.

It’s presumptuous and a tad icky to think I parent Polly because God knew I’d do it well.

It’s also presumptuous to claim that God gave me Polly was because of my need to be educated, to grow, to mature, to accept.

But on some level, it’s true.

God has broken and changed me. With Polly, and now Evangeline (the little girl we adopted from Ukraine who also has Down syndrome), I’ve found the courage to ask myself hard questions that have roamed about my head for decades. I’ve thought through past interactions with individuals who have special needs. I’ve looked at what was so scary as a kid in the face for the six years now.

And I’ve realized that my fear didn’t have much to do with other people.

It had a lot to do with a nagging fear of brokenness in me.

My daughters are conduits of grace and vulnerability in my life.

Years ago, I hid away in a tent because of fear and ignorance. Thankfully, by God’s grace, I’ve been led out of the tent by two little hands, one with a simian crease, the other without.

(This post is from the archives, reconfigured to part of the Summer Disability Series Blog Hop: The Influence of Disability Within Your World).