We had an echocardiogram for Colette yesterday. The doctor told us it would take between 20 and 40 minutes and 40 minutes later when he was still silently staring at the ultrasound monitor I figured it wasn’t great news. He came back from reviewing the results and said, “you’re baby has congenitive heart disease.” I don’t remember what else he said except that he kept drawing on this large illustration of a heart. He said the condition isn’t life threatening and she’ll have a normal life expectancy but then our other doctor, who is likely the most depressing person I have ever met, told us her prognosis isn’t good have both omphalacele and this heart condition. This doctor is a big advocate for termination so he really likes to lay it on thick.
I spent some time researching and am hoping to move up to CHLA for her treatment as it's much higher in ranking than CHOC. I found a woman online whose child has the same combination of diagnosis. Unfortunately her daughter didn’t make it because she was also born early. I sobbed when she told me. I sob all the time right now. Then I met another woman whose child has the same combination and just brought her six-month old home from the hospital. She sent me photos. When I imagine our future I have two narratives playing out in my head. One where we’re in the hospital a lot and one where we’re home alone.
We fell into our routine of grief. We sobbed in the office, drove home in a daze, sobbed in the living room, then I went sleep with the TV on and Trever did something productive. We both cancelled all our plans and I thought about quitting my job, moving away, and finding any way to escape life. Then I remembered the pattern. Yesterday is the worst, it’s all a blur and shocked grief. Today we wake up with headaches and puffy eyes, stay home most of the day, cry less, go out to dinner and start to let it settle in. Then I’ll slowly need the TV on less, we’ll probably see people in a couple of days, we’ll start re-entering life and we’ll start accepting what is. It does get better, I know the pattern and now I know how to ride the wave. But this time I’m holding her with an open hand, not because I want to but because life has pried my fingers flat. As for that part of it, I’m not sure it follows the pattern. I don’t know if one can make peace with the looming potential of losing your baby, I’m not sure that pain will ever dull.
I met with an former professor of mine this week. He has been through so much suffering in his life and I needed some perspective. It was an interesting meeting because I left really encouraged and yet looking back he didn’t say a single encouraging thing about this life. He has what they call, an eternal perspective. I think it’s what we’re meant to have, and I wonder if we only are truly capable of one when life becomes too painful to cling to. He genuinely finds hope alone in the belief that the pain of this life will be unworthy to be compared to the joys of the eternal. He’s banking his life on that, that restoration will make the pain of today no longer worthy to be noticed.
He didn’t encourage me with talk of miracles (although we keep praying), he encouraged me by agreeing that life is hard and then you die. And yet true hope cannot be squashed, because although we pray for miracles today, our true peace and belief and promises lie in the hope of what is to come, that whether we live or die we are the Lords.
Because, surely every man at his best is a mere breath, so we have hope only in what is to come, and yet pray for mercy today.
