The Harsh Realities Of Parenting With A Genetic Disorder

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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)

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