The Harsh Realities Of Parenting With A Genetic Disorder

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466386327By Jodi Humes

Before I met my husband, my dating life was defined by my Marfan Syndrome. I refused to get serious with anyone before giving them ‘the talk’, in which I would explain what Marfan’s is and how it affects me. I let them know I would most likely never drive, that I would be limited in my career choices, and that I had decided to never have children because of the risk of passing it to my children, as well as the risks that pregnancy posed for me.

When I met my husband, a lot of things changed. He was the first person who wasn’t afraid of the risk and responsibility of loving someone with Marfan’s. He was also the first person who made me question my decision not to have children.

For the first time, I started to ache for the family I was denying myself. I tried be resolute based on all the practical reasons:  there’s a one in two chance that any child I have will be born with the same disease; pregnancy and especially labor are dangerous for me and my heart; I have physical limitations that would make raising a child harder than usual. But try as I might, I couldn’t get the picture out of my head of the child I’d grown to want so badly.

I can’t really say that I made a conscious decision. The conversation gradually shifted from ‘if’ to ‘when’, and within a few months I was running out to buy a pregnancy test if I was a day late, hoping and praying that I would see that second pink line. Five months later, I did. Pregnancy was hard, but I loved it. Labor was complicated, but I made it.

Up until recently, Marfan’s hasn’t stopped me from being a good mom. It’s slowed me down, sure. But I have never been at the point where I’ve questioned my ability to function on a day to day basis because of it.

Until now.

When I first brought my son home, I felt like all of my fears had been unfounded. I was caught up in the bliss of new motherhood, even blessed with a child who slept five or six hours each night from the day he came home. Mothering came easily to me. I was sleep deprived and stressed and a little lonely, sure. But I was capable.

And then he started to crawl. At first, this wasn’t a big deal. I set up barriers, put up a gate or two, kept the floor clean, and let him roll around to his little heart’s content.

Then he got faster. I would step out to pee, and find him in a different room. He got curious, so I plugged the outlets and vacuumed the house every day and ran around after him panicking that I might have missed something, anything that could hurt him. He got stronger, and I started to think I might be in over my head. I would pick him up to soothe him and wind up with a wrenched shoulder from him thrashing. He tore the fancy gates we bought out of the wall, even after they’d been screwed in with super glue. He tugged on my hand to pull himself up, and my wrist hurt for days.

He’s gotten heavier, and the mommy guilt has kicked in. I don’t hold him, cuddle him, rock him enough. But when I pick him up, my back aches. When I hold him, it starts to spasm. When I rock him, it knots up so tightly that I can barely pull in a breath.

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