Someone asked me the other day how I was able to stay so positive when my daughter was obviously dying right before my eyes. I gave the simple answer, the one that most often rolls off my tongue - I didn't know how long I would have with Matilda, but I knew I wanted that time to be beautiful.
But the real answer is much more complicated.
When we were in the hospital with Matilda, things didn't look good. She didn't look good. The situation was very grim. So I leaned into my faith. I chose not to be upset with God and, instead, accept the situation knowing that I was not in control. Believing that Matilda's life was meant to be whatever it would be, even if that meant heartbreak and pain - that needed to be enough.
So I sat with God each day and prayed for strength, comfort, and peaceful acceptance.
And then one night, God introduced me to Death. The mother's screams, the family's sorrow, the ache that filled the PICU from the loss of a child. It was then that I invited Death to sit with me for a while. God on one side, and Death on the other. Not one against each other, but together in a group.
I did not have control over how long Matilda would live. But if her life was only going to be six weeks long, I wanted to fill it with happiness. I wanted to send her off with memories of her mother singing her songs, her papa reading her books, her brother's voice over FaceTime, and all the love of an entire lifetime packed into that six weeks.
And if I was called to send her off into the night, I wanted to send her off with a friend. So, if that meant getting to know Death, sitting with Death, then that is what I was going to do.
When I realized that, I was able to let go and enjoy whatever time I had. When Matilda's alarms would sound, when she would crash, when panic took over her room, I was there experiencing it all, taking every second of her life into my soul. I didn't want to turn away, I didn't want to scream, I didn't want to miss anything even if that meant heartbreak and pain.
That was her life, her journey, and I felt honored to witness the amazing gift that she was. That she is.