I was already pregnant with my son when I found out that my 2-year-old daughter had a rare form of Ehlers-Danlos syndrome — a genetic disorder she inherited from me that I didn’t know I had.
When I learned the disorder would ravage our joints, cause digestive issues, and could potentially affect our hearts, cause blindness, brain aneurysms, and other things medicine may not have realized yet, I was devastated.
Weeks later, sitting in the office of a prenatal genetic counselor, the doctor told me that he didn’t have any worries about me bringing another child into the world. He said that if he were in my position, he would have done the same thing. After all, I was healthy and there was no guarantee that I would pass the disorder down again.
But it wasn’t long before I began to understand the impact the disorder was having on my body, along with my daughter’s. Through physical therapy appointments and doctor visits, my daughter wasn’t even in preschool when she got her first pair of leg braces. Now at age 9, she no longer wears braces, but sometimes uses a wheelchair if she is going long distances.
Although my son was at first suspected to have inherited the disorder, he was instead diagnosed with an unrelated heart condition and epilepsy — a condition that has been ruled out as genetically passed down by me.
When I remarried last year and the question of more children came up, my gut reaction was, No, I can’t have any more children with special needs; it would be irresponsible of me to do so. Yet, here I am 4 months pregnant with a baby boy — and I don’t have any regrets.
I’m sure people are going to have a strong reaction to that statement, but the fact is, I don’t care. I live with my children every day. No one knows the details of our lives better than I do. No one knows what it’s like to have a rare disorder better than I do … or what it’s like to pass that disorder down to a child.
I have evaluated all the angles and I have looked at all the possibilities. When it really came down to it, I was willing to have another child, despite what other people might think.
My daughter has some physical limitations. She is not as strong as other kids and she is not always able to keep up. But I have never seen a child with more zest for life. She has recently come to understand her diagnosis and it hasn’t held her back. And while we were once told that she could possibly become blind and wheelchair-bound, six months ago we learned that blindness will most likely never occur. Scans and tests have revealed no issues with her brain (or mine). My daughter’s heart is as healthy as can be, and her legs are getting stronger by the day.
I live with this disorder, and I love a child who lives with it. There hasn’t been a moment that I’ve regretted being born or a single time my daughter has wished her life away. I see all that I have accomplished and the impact my daughter has on the people around her. I know there is value in imperfection that perfection just doesn’t have.
My new baby may not inherit my broken gene — my son didn’t. In fact, my son ended up with something much worse. Lightning struck twice in my family, and I’m reminded that even the healthiest parents never really know what can happen when they roll the dice on procreation. Logic would have told me that if my first son didn’t inherit the disorder, he would be fine … but life has taught me that you can always be handed something else.
The baby I’m about to have could be born with a condition that was never even on my radar, or he could be completely fine. None of us ever really know how our children will turn out. And some of us learn later that being born healthy doesn’t guarantee that we will stay that way.
What I have learned from raising children with special needs — along with my own condition — is that who we are is not nearly as important as who we choose to be. I choose to run a nonprofit for domestic violence victims. My daughter chooses to sit next to the kids at lunch who look lonely. My son is still young, but everyone around me says his smile is infectious.
I don’t know what the genetic makeup of this my baby will be or what his physical health may look like, but that is less important than who I raise him to be. The only thing I chose was to give life to a child who may one day change the world.