The Harsh Realities Of Parenting With A Genetic Disorder
Before I met my husband, my dating life was defined by my Marfan Syndrome. I refused to get serious with anyone before giving them â€˜the talkâ€™, in which I would explain what Marfanâ€™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 wasnâ€™t afraid of the risk and responsibility of loving someone with Marfanâ€™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: Â thereâ€™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 Iâ€™d grown to want so badly.
I canâ€™t really say that I made a conscious decision. The conversation gradually shifted from â€˜ifâ€™ to â€˜whenâ€™, 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, Marfanâ€™s hasnâ€™t stopped me from being a good mom. Itâ€™s slowed me down, sure. But I have never been at the point where Iâ€™ve questioned my ability to function on a day to day basis because of it.
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 heartâ€™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 theyâ€™d been screwed in with super glue. He tugged on my hand to pull himself up, and my wrist hurt for days.
Heâ€™s gotten heavier, and the mommy guilt has kicked in. I donâ€™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.