*This is not a commentary on abortion or anyone else’s choices. This is my personal journey and my feelings on the matter.
After finding out the news recently, a friend asked me if it is “normal” to find out this late in pregnancy. I was briefly offended, because it was one of the first questions she asked, and it seemed a pointless question. It did get me thinking about the decisions that we had made that led up to this late diagnosis, and in retrospect, I am so grateful for them.
We declined antenatal testing when offered early on. For us, the reason was simple. We would never opt to terminate a pregnancy. It wouldn’t have mattered to us if we found out at 20 weeks or now, other than making the pregnancy maybe longer, harder, and sadder. People may not understand this decision. I know that many doctors don’t understand based on the reading that I’ve done. Some people see less value in a shortened life, in a child with handicaps, in a child that cannot understand or experience the world in the “normal” way, in a child that will – sooner or later – succumb to a terminal disease. A friend openly admitted this to me in a recent, touching email. I may have been victim to this perception problem too, I realize. Now realizing that my baby faces this type of life, my view has shifted.
I am grateful for the first 6.5 months that we had with the normal, healthy pregnancy glow about us. The excitement, the things to look forward to, the planning, the casual, happy way in which we treated our coming baby. I am not sorry that we didn’t know then. I am not sorry that we know now.
I am not sorry for this pregnancy or this beautiful life growing inside of me. I am not sorry that we never tested for this or the other possible diseases that James could have. I am not sorry for the happiness and optimistm that I had for the first 6.5 months of my pregnancy. I am not sorry for any of the choices we’ve made. I am grateful that I never had a doctor tell me to terminate pregnancy, that my baby’s life wasn’t worth having.
It’s not to say that I don’t struggle with the “what ifs.” I do.
What if we had had children at a younger age? What if we had conceived James one day later or earlier than we did? What if we had never moved here from Charlotte? Would this have happened had we never left that town? Chaos theory. The butterfly effect. One small change in the system. What if? What if? What if?
What I’ve come to decide is that the what ifs don’t matter. James was always meant to be the way he is. There would be no changing this. There is no changing this.
I sound brave. I know I do. And I feel brave when I write these words. It’s an act though. I am not brave. Today was a really hard day. I woke up early for work, and I took forever to make myself get out of bed. I briefly considered calling in due to emotional distress, but I pulled myself together and went to work.
I may have seemed ok on the outside – putting on a brave face. But I wasn’t, and I’m not. I’m not going to be ok ever again. But I am not going to give up and give in. I am just going to take it one day at a time, enjoy my baby kicking and wiggling vigorously inside me, play with my children, and try to be grateful for what we do have and not feel constant sorrow for what we are losing.
As our perinatologist has told us – we should focus on all the miracles big and small that got us to this point.