This is a fantastic post by “MarfMom” about the birth of her son, whom they’re pretty sure is a Marfan just from his appearance–just as we knew Allie was when she was born (and especially after Gianna was born.
Pretty much sums up my sentiments, in a way I’ve never been able to quite express:
How I feel about this is complicated. And because it’s complicated, my gut reaction was to not tell anyone. There were two things I didn’t want to hear: “This is your fault” and “I’m so sorry!” I think the first is fairly obvious. I mean, clearly Mark didn’t pass on the gene. I know it was me. However, assigning blame makes it seem like was a purposeful act, which it most certainly was not. Also, I don’t feel at all guilty about J’s diagnosis.
The second is harder to explain. I mean, yes, not having Marfan syndrome is preferable to having it. And yes, I feel sad when I think about some of the things that J will most likely go through, like surgery (quite possibly multiple; I’ve had 5 surgeries and 2 other procedures myself, not counting my c-sections). But, when I look at Marfan through the lens of my own life I’ve commented repeatedly that I am not sorry that I have it. There are days it makes me sad and days it makes me angry, but as I’ve written before I have found a lot of beauty in it and I believe I am exactly the way God intended me to be.
I feel like I’ve had to fight against the idea that because I have this illness I am “less than.” Hearing people say they are sorry for Baby J’s diagnosis (or even worse, if they were to follow it up with a declaration of how terrible it is or a guess at how we must feel) makes me feel as though they are making a statement about the quality of my own life, even if they don’t intend it that way.
Please go over there and read the whole thing. It’s a really powerful statement.