This piece in The Atlantic is long but worth the read.
When I was pregnant with my first two children, I remember telling the doctor that I didn’t need the prenatal tests. I looked over and Ben and he agreed, saying, “It doesn’t matter. We will take care of the child no matter what.”
When I was pregnant with my third child (the one after our Downey Ellie) we asked for the doctor to run every prenatal test available. I don’t know what we would have done differently with that information. I just think that for the most part we were a little gun shy and were no longer naive to what was possible.
I have had friends who were pregnant tell me that they waited to tell people about the pregnancy until after their test results came back. I haven’t ever asked them why, but I am curious.
It may be unpopular to say out loud, but here goes: Abortion is a place where I get hung up when it comes to kids with complex medical conditions. Every life is worth living, no matter how hard the life may be. But, kids like Ellie take a lot of work and resources — and she’s not even the most complex of cases.
Sure, there are resources available, but they are hard to get. It is not easy to navigate through the paperwork and red tape — and I have a master’s degree and my husband is an attorney. Just getting basic supplies, even if you are willing to pay out of pocket, is sometimes nearly impossible.
This life is expensive and lonely and so busy. You constantly feel judged by people who know nothing about your child’s medical diagnoses when they share with you what they would do if they were you or what you should do differently.
I have seen babies, left in the hospital by parents who could not take care of them, waiting for someone to come along and love them. I have heard newborns cry all night for parents who just never came back once they heard about their child’s diagnosis.
I don’t know the statistics, I would need to do some research, but my guess would be that kids with Down syndrome are less likely to be adopted. I also wonder about life expectancy numbers or quality of life for these kids who are left in the system or who are unable to receive early intervention and care.
But what would the world would be like if there were no Ellies?
Ellie scares me to death and raising her is the hardest thing I have ever done or will ever do, but because of her I am so much more. MY life is so much more.
I am sad for everyone who doesn’t have an Ellie because they will never know what real joy is. I can’t imagine how worthless humanity would become if we didn’t have people like Ellie to teach us how to do this life right.
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