As a teenager I had three genetic tests to make sure I would not give my children fragile X syndrome, the mental disability my brothers have. To have the "normal" family of my dreams.
The tests showed I didn't carry fragile X. So God gave me a son with Aspergers instead. Isn't it ironic? (And yes, Alanis Morissette, it did rain on my wedding day!)
Today my kids and I biked to the drugstore postal outlet to pick up my book. Well, actually the whole book isn't mine, just pages 268-271. My essay, "Growing Up Unique: an only sibling of 2 fragile X affected boys discovers she's normal" was published in X Stories: The Personal Side of fragile X syndrome.
My essay describes the loneliness, confusion and pressure I experienced growing up with disabled brothers, and how their meltdowns embarrassed me.
As we were waiting in line behind an elderly couple with the wrong postal codes, K. had a meltdown.
I had to hold him in my arms with his legs around my waist to stop him from rolling on the floor kicking the woman behind me. And he was making a lot of noise. (I would have taken him to the car, but we came on bike.)
Meanwhile 4 year old G. was peeling stickers and sticking them onto a greeting card but my third and fourth arms (!) were too tired to stop her. I offered to pay for the card but was informed I'd have to wait in another line-up.
No one in the building wanted me to do that.
I felt the customers' judgmental stares. People can't see K. has a disability so I'm sure they thought I was incompetent. Or worse.
I was mortified. And it felt like deja vu.
Some days I think my experience as a sister made me a more compassionate parent for K. Other days my life feels like a cruel joke. Today I have no answers.
No wise words about God. No great doings for God. Today I just want to climb onto God's lap, like the drawing in one of my children's bedtime stories.
I'm proud of my brothers and I love my kids, but right now I want to go hide under a quilt.
Maybe I'll bring my book.
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