I saw a little girl with her mom at the grocery store the other day. She was wearing a cute little flowered dress and had short blonde hair with a bow in it. She seemed content playing with a box of uncooked pasta, listening to the noodles shake inside.
The little girl also had Down syndrome.
For awhile, seeing children with disabilities sent me down a deep dark tunnel of sadness, guilt and anger. It sometimes took days to recover from and days to remind myself that I did the best I could. But that particular day, I didn't feel any of those things. I felt connected to the little girl, connected to Grace, and especially connected to that sweet little girl's mother.
For 2 weeks I had a daughter with Down syndrome and Down syndrome only. For 2 weeks, I carried the weight of a decision that I didn't know how to make. A decision I felt like I couldn't make. Those 2 weeks between initial diagnosis of Down syndrome and our final and fatal diagnosis of Down syndrome and Hydrops were by far the hardest 2 weeks of my entire life, and the hardest to recover from. I had so many dark thoughts...thoughts that still haunt me today and make it incredibly difficult to forgive myself for.
Sometimes I think God made Grace sicker to let me off the hook. Like He gave me a get-out-of-jail-free card to free me from the whirlwind of confusion I was feeling. He knew I couldn't decide, so He helped guide me along. It probably sounds twisted to admit this, but I feel grateful and blessed that He did.
Many women in my support group have terminated for Down syndrome alone. No other known issues. Nothing else to guide them except research, faith and trying to do what's best for themselves and their families. I hear it over and over again whenever I share my story: well, your daughter was going to die regardless. It's so easy for me to hide under the covers of that statement and forget those 2 weeks of complete turmoil ever happened. Society as a whole is *somewhat* more accepting of those circumstances, of that choice for those reasons. But what about the women that quietly suffer every day in a diagnosis that's not so socially accepting? A diagnosis, like mine, that left me completely lost for those 2 weeks? Those mothers that choose termination AND those mothers who choose to continue their pregnancies, both with very little support?
For those that think it's a clear and easy decision, let me tell you from someone who has actually lived it -- it is not. It's so easy for us to judge one another. Before all this happened, I thought I had all the answers, too. But a decision at a birds eye view is significantly easier than a decision that you yourself are living and will have to live with for the rest of you life.
One of the moderators in my support group likes to talk a lot about our crisis-self, and I think her idealogy is absolutely brilliant. She says that we make decisions during crisis mode that are the best we can do at the time. Later, when the crisis is over, it's easy for us to question those decisions. To feel guilt and regret about doing and not doing this or that. But a decision in crisis mode is always the best decision we can make. It's instinctual, fight or flight. It's the best we can do at that time under those circumstances. But here's the thing, crisis-self and non crisis-self do not always make the same decisions.
I'm not sure if the mother at the grocery store learned about her daughter's diagnosis at 15 weeks like me or at 30 weeks or after delivery. But whatever the case, she's a kindred spirit. As are all of the women in my Ending a Wanted Pregnancy support group.