Despite all my fears and outrageous nightmares about meeting with the surgeon who operated on my daughter, I am still here. It did not destroy me. I am still breathing. I am still coherent. I can function. A moment I was sure would tear me to shreds beyond repair, has not.
So what did it do? What happened to me as I listened to him genuinely and sincerely answer all of my questions? It made me cry. It made me hold my breath. It made me think I couldn’t take anymore. I listened to every word. Every syllable cut a little deeper. The details of what happened to my daughter echoed through my head. I closed my eyes, for I could not bear to look into his. My mind started putting pictures in place to match the narrative I was hearing. The surgeon explained very carefully and with great consideration how and why he thinks my daughter died.
We thought we were dealing with a Choroid Plexus Papilloma, a rare but benign brain tumor. We were not. We were dealing with an aggressive malignant Choroid Plexus Carcinoma, an even rarer, but obviously more dangerous brain tumor. Regardless of which it was, the treatment would have had to be the same; surgery to remove it as soon as possible. We found out in the weeks after her death, when the pathology report came back that it was malignant. At the time I didn’t care. At the time, I thought who cares?!? Cancer didn’t kill my baby. She bled to death on an operating table!!! But I see now that the nature of the tumor itself changed the odds dramatically. The fact that it was malignant and aggressive meant it was a lot more difficult to remove and it was being fed a lot more of my baby’s blood. By understanding some of what my girl went through has removed some of the questions that have been torturing me since that horrible day.
Three months ago, this doctor came out of the operating room and told me he lost her. This time he was telling me how he lost her. The trauma of losing my daughter has broken me into unrecognizable pieces. Everything changed forever in that moment. Everything. Forever. After hearing what Dr. _________ had to share with me, I am starting to be able to make sense of my own trauma. Just starting. I am being forced to face some horrible facts, and though I know nothing will bring her back or change anything that matters, knowing more, understanding of what went on in that operating room helped me. I am shocked at the effect, but I can’t deny it. There are times when it feels like the tide that has been drowning me for months, might be starting to ebb. There are times, here and there, when I think this might not destroy me. I still don’t know how. Every day, every hour, is such a struggle. I don’t know how anyone can sustain this. But, I am starting to feel hope. For some reason this scares me.
Anyone who understands grief, who lives with it, knows that it never goes away. It’s not like when your Gran passes and eventually you move on and live your life. You don’t carry the sorrow of losing Gran every day. You don’t need time every day to express your grief over Gran because you just can’t hold it in any longer. I can tell you that since losing my child, that is exactly what I do. I carry it every day and I need time every day to let the pain out because I just can’t hold it in any longer. The world doesn’t wait for grief. Most people don’t get it and sometimes get annoyed by it. You’re still sad about that? Since I am interacting more and more every day with more and more people, I have to pretend, to a certain degree, that I am a normal functioning human being. I don’t feel like one, but the world wouldn’t be able to handle it if I showed them each moment how I really feel inside. What I feel inside is cyclone of fear and darkness and sorrow and pain and confusion and anger. It never stops. What I heard from Dr. ________ while sitting at my parents’ kitchen table, is helping me to understand that cyclone. I don’t know why, but it feels like relief. Not permanent. Not constant. But even the shortest moment of relief, a moment that brings me peace, is welcome.