When Lily was first diagnosed, I never, ever, ever said, Lily has brain cancer. I would never say that word. I mocked my mother's whispering of "cancer." I refused to use terms malignant or benign. I did not even want to speak to an oncologist--just a neurosurgeon.
Cancer is something that happens to other people. Not to my daughter. It is something that happens to adults, old people. Not a 14 month old. Plus, hadn't we paid our dues to the universe? Lily was a 29-week preemie (as a result of my preeclampsia)-who spent the first 10 days of her life on an oscillator--not in my arms. Wasn't that enough?
When we were inpatient at CHOP, Mike's Aunt Lydia encouraged us to reach out to other parents. I refused, I never, ever, ever wanted to see any of those people again-those cancer parents. I did not feel dislike; I just decided that I was not a part of their club. In truth, I could not allow myself to love anyone else who had a brain tumor. I could not do it. I was raw. And if their child died, what did that mean for Lily? I could not predict the outcome for their child-therefore--I could not predict our friendship. I had no strength to give.
Then one day, I googled, "Ependymoma and Preeclampsia, " and I found Shanda and her beautiful daughter Calla. Calla, the same age as Lily, was a preemie. She had an ependymoma. And she was okay. It was my first step into acceptance of cancer. Shanda, to me, is a Hero. She knows other cancer moms. She has accepted her membership into the cancer club and in doing, so, she helps someone everyday learn the ropes. She has taught me so much.
Slowly, others have trickled in--amazing beautiful parents of brain tumor survivors. Slowly, I've realized that this cancer club is really a Survivor Club. A club of veterans and heroes. It is not a club of darkness and despair. It is not where cancer is--it is the very absence of cancer. It is where we grow strong and healthy. It is where faith resides.
Last week, I signed up to be a Parent Ambassador for Alex's Lemonade Stand. I am terrified. I don't know the outcome--I don't know if I have the strength. For better or worse, I am part of the club and I know I am not alone.