One thing that we heard repeatedly when we were expecting James was that there are no wrong decisions when faced with a diagnosis like Trisomy 18. I’ve thought about that often since June 23, 2016 – when we knew for sure what we were facing.
I keep coming back to the last 48 hours of his life. I keep seeing my sweet baby after surgery, how good he looked, how easily he breathed. I see pictures of him when he was born – so tiny, so frail looking, and then pictures when he died, pink and chubby with big alert eyes. And I keep wondering, did we make the right decision? Did we kill our son?
Before my mind goes too far down that path, I remind myself that there were no wrong decisions made. We did the best we could on that day. We loved him as hard as we could, and we held on. But when he seemed tired, we let him go.
I am a strong believer in hospice and palliative care. In this country, sometimes we lose sight of what’s important. We think that we must be kept alive at all costs – that death is a disease that we must cure. That death is somehow a failure of the system.
Death is natural. It is part of life. It comes for all of us. We cannot stop it, and we cannot change that one immutable fact.
We could have kept pushing James. We could have continued treatment. And he might have lived. Maybe he would still be here with us. It makes my heart hurt to think that we may have sacrificed time with him in making a poor decision.
There’s no way to know what might’ve been. Grief is a deceiver. When going through the “what-ifs” over and over, I only think of the good ones – what if he’d lived another 2-3 years? What if he’d beaten the odds, and he lived to be in his teens? And then I realize that it could so easily be the other “what-ifs” – prolonged hospitalization, increasingly aggressive and painful interventions, repeated CPRs, more medications.
When I come back to it over and over again, I remind myself that he was fed through a tube. He was hooked up to 3 machines at any given time. None of that was likely to significantly change in his lifetime. We were already staving off death then. He had 5 wonderful months with the people that love him most in the world. We cared for him as tenderly and lovingly as anyone could have. And when his life ended, we continued that care to the bittersweet end.
The decisions that we made were not mistakes. There can be no mistakes when you love your child with every inch of your heart and soul. There can only be love and the decisions that spring from it. The same is true for every parent of every child. Whether they choose comfort care or major interventions, the decisions come from a place of love. And love for your child will never lead you astray.
We miss you, little star, James Julian. We long to hold you in our arms.