First of all, to those of you who know me in real life and to those of you I’ve never met: thank you. Thanks for reaching out, for sending thoughts and warmth and love our way. Lauren and I have been just bathed in care in these last few days and it smooths the sharp edges of grief in a very real way.
We are waiting. Due to some unbelievable inter-hospital bureaucratic bickering, our Tuesday morning hospital admission was cancelled late on Friday of a long weekend and my care transferred to our original hospital, which of course doesn’t have a bed available. I could rant and rave about the lack of compassion involved in allowing a couple to sit and sign the most difficult set of paperwork that they hopefully will ever encounter, answering all of their questions so that they know what to expect, and then yanking the rug out from under them. I could, but honestly, I don’t have the energy anymore. It’s a very strange thing to hope that the worst day of your life will be scheduled soon.
In this dark, disorienting night of waiting I am trying to note the things that I am thankful for. Some of them are:
- The head of genetics/the man who gave us the worst news on earth. He has treated us with compassion and care, phoned to see how we were coping, answered pages of our questions, managed to give us every awful detail of Puddin’s prognosis with no sugar coating but with an incredible amount of tenderness, yelled at various hospital officials to try to keep us from being transferred, offered to come to the other hospital to see us afterwards and generally renewed my faith in the possibility of compassionate medicine. There is a very good bottle of wine in his future.
- Our friends and family, who have surrounded us with love and food, space to be hermits and who have shown up when we’ve been ready for company. We are so, so fortunate to have the people that we have in our lives.
- The shower, which is turning out to be a very practical place to cry wrenching, corrosive tears and then wash my face afterwards.
- Strangely, I’m grateful in the most painful way imaginable for these last days of carrying Puddin, for the time and space to rest my hands over his kicks and squirms and to understand that we’re acting out of the fiercest love we’ve ever experienced. To begin to feel some peace in sparing him pain. Paradoxically, this time is also the worst possible thing. It’s complicated.
- And most of all, I’m grateful for my amazing wife, whose steady love and warmth and strength have been the bedrock of my days. I didn’t know that it was possible to love her more as we cry together, try to keep ourselves busy together, remind each other to eat, and just prop each other up.