I killed my son. That’s what a man wrote to me this morning. He asked me to think about it.
Well, I’ve thought about it, and I have some public confessions to make.
But first, let me give a context. He said specifically, “remember that your son has this disease because of YOU! You did this to your son. Just think about that.”
The worse part is that this came from a parent of a child with the same condition (Hunter Syndrome) that my son has. It is X-linked recessive, so in many cases, the mother carries a mutation that is passed onto 50% of her sons. Daughters have a 50% chance of being a carrier. But in some cases (as in ours), the mutation is spontaneous in the embryo. In other diseases, such as autosomal recessive ones, both parents are usually carriers of one or more types of mutations on that gene.
So imagine the pre-existing guilt that many parents of children with genetic diseases already feel about their child’s disease. Even though no parent would choose for their child to have such a disease (although some incredible adoptive parents choose to welcome a child facing the same), or in most cases, knew they carried these mutations, or knew that in fact, that most people carry at least one to two severe mutations that can cause prenatal death.
That guilt is (unjustifiably) already carried by parents of children with genetic diseases. So others pointing it out just magnifies an already deep-seated and little-spoken feeling.
So while I am angry about someone expressing such hateful and uneducated words, I must still make my own confessions about my responsibility for my son’s condition.
I am not a perfect person. Just because I have a sick child does not make me any better than the next guy. I’m no angel.
I am not a perfect parent. I’ve yelled at my kids more times than I can count.
My genetics aren’t perfect. At least one of my kids inherited my jumbled teeth, another – a tendency toward love handles, and another – a rare and terminal genetic disease.
But I love fierce.
And parenting a child with a rare, genetic disease has taught me a great deal.
One of those things is that I’m not to blame for my son’s disease. And the reason I’m not to blame has nothing to do with the fact that I’m not a carrier. It has nothing to do with the fact that genetics is a wild, wild west of pairing the traits of two humans that doesn’t always happen perfectly. It has nothing to do with the fact that I had no idea that such terrible diseases existed before he was born.
I am not to blame for my son’s disease. No more than I am to blame for his brown eyes. Or his laugh. Or the crinkles around his eyes when he smiles.
If you have a child with a genetic disease, let me be clear. You are not to blame.
Look at all the qualities about your child that you love.
But do not blame.