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gillian marchenko

Author and Speaker

15

The Tent, disability blog hop

07.18.12

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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).

Did you like this? Share it:
  1. Cindy Bryl says:

    beautiful and has given me an idea for my own post. thanks for conjuring up an old memory.

    • Thank you Cindy, for reading, and hooray for inspiration!

      • Joanne Bastante says:

        Hi Gillian,
        I was moved by your candor. I, too, have a child with Down syndrome. Until I gave birth to him, I had very little interaction with people with DS. I can relate to being in a tent or what I called an isolated bubble. I would love to follow you on twitter. Blessings, Joanne

        • Hi Joanne! thanks for finding me and commenting! I’m @GillianMarchenk on Twitter and would love to connect with you too.

          Do you have a blog? Let’s keep in touch!
          gillian

  2. grace brouwer says:

    wonderful. this brings up old memories…amazing how God prepares us for life…with MANY experiences. you are a blessing to me! thank you for your wonderful writing! 🙂

  3. Becca says:

    Beautiful post, Gillian. I love how you conjure the memories of your childhood experience so vividly. I once posted about how disability played more of a part in my early memories than I’d thought, once I really started thinking about it, digging deep. I think those early memories really resonate, help us to build on who we are today, laying some of the groundwork in some way for how we view and parent our children, how we envision their futures.

  4. shannon says:

    Beautifully written. I’m really loving this topic

  5. Ellen says:

    I like your idea of a tent. How it protects you from the outside world or at least gives you the feeling of being safe even though a storm could take that away. We were in a tent. I have a 7 week old who was born with Down Syndrome. Even though I am still unsure how to handle things at this stage when I go out I notice a lot of other families with a disabled child. How did I never notice it before? I guess the answer is I saw what I wanted to see, but this storm has taken away my safety and maybe I didn’t really need it in the first place.

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