“I’m Sorry”

Tomorrow, on October 5, 2019, Cecilia will be exactly 5 months old, and it will be exactly 6 months since Lizzy died. In those 6 months, I cannot count the number of people who have heard about Lizzy’s death and told me, “I’m sorry.” It is, after all, the polite thing to say in such a situation. I think I have heard every “I’m sorry” that there is to hear at this point, from the perfunctory “I’m sorry” of physicians to the tear-filled “I’m sorry” of family members, and everything in-between.

And what do you say to these “I’m sorry”s? The polite response is: “Thank you.” But what are you thanking them for? Their grief? Their kindness in letting you know that they feel sorry for you? Their gratitude that this tragedy didn’t happen to their child? More often than not, I find myself wanting to say, “I know.” I know that you feel sorry for me; I know that you’re grateful it wasn’t your child that died; I know that you don’t know what to say to make this better for me. Trust me, I know.

I remember people saying to me, “I know this isn’t what you need right now,” or “I know I’m not what you need right now,” and I remember thinking, “All I need is the only thing that no one can give me: to rewind the clock and undo what has been done, to give Lizzy back to me, alive and smiling.” In that sense, no. No one has given me what I truly need, nor can anyone hope to give me what I truly need.

I am sure that I sound callous to the helplessness that everyone around me feels under these circumstances. I do not mean to diminish the emotion that people really feel in reference to me and to Lizzy, nor do I wish the many “I’m sorry”s that I’ve heard unsaid. The people who say them are acutely aware of how inadequate they are. How can two words communicate a world of grief, a ruptured life–a wound that can never heal?

And yet, of all of the “I’m sorry”s that I’ve heard, the one that stays with me is one of the first. After we were told that Lizzy was brain dead, I was walking the floor of the PICU in Children’s Hospital trying to find the attending physician to ask a question, when I encountered one of the doctors who had done the surgery on Lizzy’s heart to try and open it up to make the ECMO life-support machine function better.

This man will have to forgive me for not remembering his name; I met so many doctors in those four days that they all seem to blur together. I remember that he had an accent; it seemed as though he were Eastern European. He saw and recognized me as Lizzy’s mom and had clearly heard the news about Lizzy. I do not remember the exact words that he said to me about the practice of medicine, but the impression that I came away with is that medicine does not have all of the answers and, sometimes, medicine fails.

In the midst of saying this to me, he became choked by tears, and stopped, looked me straight in the eyes, and said in a soft and stifled voice: “I’m sorry.” His hands reached out to his sides in a helpless gesture, and he repeated, “I’m so sorry.” And, I remember thinking, here is this incredibly intelligent and skilled man–this surgeon–who spent hours trying to modify my two-year-old daughter’s heart so that a machine could better pump it for her, and he feels like he failed me.

In his “I’m sorry,” there was a world of self-condemnation, of failure, of the helplessness to which even surgeons are bound, because, despite what we tell ourselves, even the most skilled humans cannot control life and death. And it was in that moment that I think I came to realize how much we lie to ourselves as a culture and as a civilization, pretending that we’ve found the answers, thinking that we’re safe, thinking that the doctors will fix it when we break it. Over 100 medical professionals had their hands on Lizzy’s case; she was treated in the PICUs of two of the best hospitals in the country; she had access to the most advanced life-saving technology in existence, and still nothing could save her.

What this tells me and what the look in the eyes of that cardiologist told me is that life and death is not actually in our hands. What happened to Lizzy is rare, but it is not that rare. Doctors and surgeons watch people die, despite doing everything that they possibly can, and this happens all of the time. And despite sitting with that fundamental existential quandary, they still get up every day and fight a losing battle.

When that heart surgeon apologized to me, I knew in a second how deeply he felt his failure and Lizzy’s loss. Although I was still in shock, trauma, and the hurricane of my own grief, I wanted to comfort him. All I remember responding was gently saying, “I know. I know.” I think I said “Thank you,” too, but if I did, there was nothing polite or perfunctory about it. I knew with my whole heart how hard he had tried to give me back my little girl. I knew completely how very sorry he was that she had died anyway. Among the many images of those four days that will never leave my brain, the look on his face remains. And, sometimes, it helps me feel not so alone.