When Your Loved Ones Judge You Because Illness Runs in Your Genes
I was 5 years old when my brother, Vic, was born. Right away, I was smitten. I made my parents call me “little mama” and vowed to do everything I could to take care of him.
When I was 8 years old, my mom packed Vic and I in the car and we drove from Alabama to Denver, Colorado to go to the children’s hospital. The leading doctor for Fragile Xsyndrome worked out of Denver, and she was our last step on the road to an official diagnosis, to figure out why Vic was experiencing delays. Since Fragile X is a genetic disorder, my blood was drawn too. I remember quite vividly the kind male nurse who taught me how to overcome my fear of needles (you look away and distract yourself!).
I didn’t really understand what Fragile X was until later, but I always took it in stride. When we returned to Alabama, my mom took me in her lap in a big armchair to explain to me about Vic having Fragile X, and that I did too, in a way.
I am a carrier, and I had a brief 8-year-old version of a lesson in genetics. When my mom explained to me that my children would have a 50 percent chance of being just like Vic, I took it in stride. “I want to have a Fragile X baby, just like you Mommy!” I look back at my naïveté with longing. I don’t have that optimism anymore.
So for me, children and genetics are complicated issues.
I have been to Fragile X syndrome conferences to learn the latest and greatest way to have kids, but every time I think there’s been a breakthrough, I discover that it’s just one more avenue of hope that gets shut down.
The last time I went to a conference I went with my high school sweetheart. We were in our fifth year of dating and he had known about my carrier status since day one. He went to a lecture with my dad and asked him for permission to marry me. He proposed not long after, and I felt so lucky to be with this wonderful guy.
Until six months later.
Over the course of a weekend, he broke off our engagement. The worst part was the reason he gave: “I’m not OK with the fact our kids may not be normal.”
It was like a punch in the gut.
Being a carrier of a genetic disorder was something I could never change.
More than that, it wasn’t just me. It was my mother. It was my precious brother.
I was broken.
Ten years later, I am still dealing with all my issues.
However, I was married over a year ago. Not just married, married to a man who loves all of me, including my imperfections. I’m married to a man who is more than happy to have a baby with Fragile X syndrome with me, if that’s how it works out. He knows I would love our child. I know he would love me as a mom. And I know he would be an amazing, doting father. He’s happy to have a child with or without Fragile X, or an adopted child. Now he’s even become a “cat person,” so he is happy with my fur baby!
I am now in my 30’s and at a time in my life where my marriage is amazing, I’m on my way to a promising career, and my ovaries melt every time I see a baby. Or toddler. Or small child. Or medium-sized child. Get the picture?
But every time I think about it, in my mind, if we had a baby with Fragile X, it feels like it would be my “fault.” If we had a baby with any mental illness, I again would feel as if I was at fault. If we have a baby, and my bipolar or Fragile X diagnosis gets in the way of my ability to parent, I feel like it would be my fault.
This isn’t a post with a happy ending. It’s a confused post, a sad post, a post full of dreams and longing and pain and shame.
This isn’t a post with a happy ending. Yet.