my sister is strong!

Anyone who’s met my sister most likely has some idea of just how strong she is. I’m continually amazed by her strength. When she was born back in 1970, doctors didn’t expect her to make it beyond a couple years of age. This was due to the heart defect that Mich had (about 50 percent of children with 5p- syndrome have heart defects). At the age of 4, she had her first open-heart surgery. This operation repaired both a ventricular septal defect and pulmonary stenosis.

When my sister turned 13, I remember thinking that this was a kind of miracle. This girl winning at survival, against all odds. Mich has always challenged my conception of what’s possible, just through her very existence. Because Mich was also born with scoliosis, when she was around 16 she had to go through an operation that would fuse her spine with Harrington rods. To me, that made her bionic.

It’s never been easy for Mich to be out in public. People are cruel. Whether it’s intentional or not, their reactions can be hurtful. When we were younger, people would stop and stare. Sometimes they would point. When she came to my school to watch a recital I was in, I remember one girl in particular who was older than me. She stopped in her tracks, pointed at us, turned to her parents and said, “What’s wrong with her?” This is a typical reaction, usually from 6 year-olds but as I’ve observed, even adults are caught off-guard from time to time.

I’ve never been embarrassed about Mich’s appearance. If I’ve learned anything from her, it’s that appearances often mean very little. Folks you’d expect to be understanding can be rude and hurtful. Others who seem tough and unrelenting will suddenly blossom with unprecedented kindness, perhaps because they catch a glimpse of what I see in Mich. She keeps me strong. When I feel like curling up into the fetal position and shutting the whole world out (which happens a lot), if I’m able to think about everything she’s been through then I know I can muster up enough courage to keep going.