The Harsh Realities Of Parenting With A Genetic Disorder

By 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.

This is where I am now. I have a rambunctious one-year-old boy, who wants to get into everything. Things he needs to be pulled away from. A boy who needs to be held, and carried, and changed, and bathed, and loved with every last bit of give that I have in me. At the end of the day, when he says his last good night, I often find it hard to stand. I usually want to cry, because I don’t know how much longer I can cope with the pain. I don’t know if I can do this all over again with the child that I’m carrying now. I don’t know how I can possibly be the mother he deserves, when I’m already giving up on so much.

I can’t make him fly. Daddy does that.

I can’t carry him on my shoulders. Daddy does that.

I can’t spin him in circles until he giggles and squeals. Daddy does that.

When I can’t pick him up one more time in a day to put him to sleep, Daddy does that.

When he’s dirty and I can’t get on my knees to wash him clean, Daddy does that.

All the things I can’t do already are making me realize for the first time how much Marfan’s has taken away from me. How many things will I miss, how many memories will I lose out on the chance to create because my body is too weak, too broken, too inadequate?

I love my son with everything that I have in me. He is the light of my life, and I’m excited to fall in love with the next child all over again. But if I could do it again, knowing what I know now, knowing that I’m not half the mother I want to be because of this disease, would I?

I honestly don’t know.

It feels like there is always something I should do for him that I can’t. I feel like his father carries too much of the burden of parenthood, when we should be shouldering it equally.

If you are a woman with Marfan Syndrome, I urge you to think carefully about your decision to have children or not. I know you have so much love to give. I know nothing else can ever induce the same joy as holding the child you brought into this world.

But speaking as someone who is on the other side, I can assure you that nothing cuts quite as deeply as knowing that no matter how badly you want to be, you cannot be the mother who scoops up your child into the air just to hear them giggle. Nothing hurts as much as rocking a crying infant, and having so much pain of your own that you can’t give theirs the attention it deserves.

I love my son more than I ever thought it would be possible to love another person. I would not trade him or give him up for anything. But the deepest fear of my heart is that he will remember me not for the love I gave him, but the disease that held me back.

(Image: GettyImages)