Dear Nora,
It was a very brief point in an appointment with all our doctors. There’s a risk with every birth that the baby doesn’t make it. The likelihood is incredibly small, but it always exists. We shouldn’t plan on it.
Unfortunately, all the things we never planned on in the last nine months seem to be the only things that occurred. I felt you move, not more than five minutes before you were born. Maybe if I had known it was the last time I’d be able to feel you I could’ve focused even better on that than the pain of the contraction that followed and the intense urge to push. We didn’t plan on your cord prolapsing.
The circumstances surrounding your birth and death took us all by surprise. A sentence I’ve heard in many forms since you’ve been born from several different people goes something like this, “At least, in the end, you never had to make that choice.” The only problem is that they’re all terribly wrong. You had a heart condition that wasn’t compatible with life. We could have elected for several open heart surgeries, but they weren’t a cure and with them came no guarantees other than pain. We had to make the choice between palliative care and palliative surgery before you were born.
Technically, we were given the option to wait until after you were born, but the doctors were very clear that it would be harmful to wait to decide should we end up choosing surgical intervention. We also felt it was necessary to have a plan, not just for the sake of having a plan, but because you deserved to have a well thought out decision. So we agonized over the choice before us. We had to choose.
I’ve said it before and I’ll say it again- I strongly believe our hearts knew the right decision for you before our brains were able to accept it. Comfort care was what was best for you, but it took time for our brains to catch up and for us to fully accept what that meant for us all. In the process we spent many nights crying in bed followed by sleeplessness after discussing the choice before us. We had disagreements, mostly when one of us didn’t fully understand what the other was trying to articulate. We read books, did research and had lists of questions for our doctors. We absolutely had to choose. It was a choice that we didn’t know how to make. It was a choice we didn’t want to have to make.
There were people who clearly felt one way about it all, but wouldn’t outright say it to us. There were those that said we’d “always wonder, ‘what if?’” I politely explained to them that no matter what we found to be best for you there would always be a “what if?” What if we hadn’t put you through senseless pain? What if we had? It seemed almost as if there was no right answer, but all along, there was. In time we came to the painful conclusion that palliative care was best for you. I still remember the first time we said it out loud, curled up in bed, tears streaming down both of our faces. We’d both been leaning towards comfort care for quite some time, but when you finally admit it, out loud, it’s terrifying. It was like a massive weight was simultaneously lifted and another placed upon me. The weight of the choice was gone, but the weight of anticipatory grief was great.
The only things I knew were that it was going to be unimaginably difficult to lose you and that was the way it was supposed to be. That “what if?” I was so certain would loom over us wasn’t there. There was certainty in our decision and with that, a small amount of comfort. You would know no pain, no suffering and experience nothing but love. And the love we felt for you then was stronger and bigger than I ever could’ve imagined. From there, it only grew.
Love, Mommy
Originally written to Nora 3.20.2021
Dear Nora 