I was always so shocked when the doctors at CHOP referred to me as "Mom" and would ask, "Where's Mom? Let's see what Mom wants to do." I'd hear it and think,"hmmmm, I wonder where Mom is?" And then I'd realize that, I was "Mom" and that I had to make decisions and have opinions and then I'd remember that it was up to me and Mike to save our daughter's life.

Lily was only 14 months old and I really did not have any practice at this "Mom" stuff. The words, "my daughter," still sounded unnatural--after all, I was hardly mother material. My closet was constantly a mess, as was my check book, my calendar and my car. I hid from uncomfortable situations and pouted like a teenager when things did not go my way. And I still knew nothing about parenting and discipline and rules and time outs. I was not a mother--I was just practicing, waiting to get good, waiting to become the perfect TV mom, with all the answers and with a great script, pre-written with a perfect happy ending.

But there I was signing permission forms for multiple brain surgeries. Updating our world on Lily's condition and prognosis. Teaching my daughter how to sit up again. Fighting for her when the nighttime interruptions were ruining her sleep. Learning that playtime was also occupational therapy. It was all so ridiculous--I was so unqualified to decide these things and definitely not capable of protecting another life. All I wanted to do was retrace my steps, backward, to her very conception and figure out exactly what error I made to land us at CHOP, in the PICU and with a brain tumor. Figure out how I screwed up being a Mom and to determine why this was happening.

Of course there was no error or reason (even though some asked what caused the brain tumor--was it genetic? was it because she was a preemie? was it environmental?), there was just shit luck, some sort of errant and rebel cell growing where it should not in my daughter's brain. And there it is, my daughter--I was her Mom and I was the only woman responsible for her life.

In a week, we hit the 3 year anniversary of Lily's diagnosis--the day that we saved our daughter's life and the day that I became her Mom, officially.


  1. You are both an inspiration. I'm happy Lily Is doing so well.


Post a Comment