We had Lily's neurosurgery follow up today. Her surgery was around midnight on June 5; so we are right at one month, post-op. Before I go any further, I should tell you that Lily is great. She's been cleared to live her life and do whatever she wants.
Thank you Jesus.
Driving to CHOP (Children's Hospital of Philadelphia) is always an experience. The people driving around CHOP are always like us: traumatized, scared out of their minds and living in a reality that does not seem quite real to them.
You've got to allow an extra 10 minutes to get through everyone's issues into to park. It is just how it goes there.
The first time we went, on May 16, 2007, we were scared out of our minds (and about to be scared out of our minds and this world). I remember Mike turned to me and said: "No matter what happens there, we are together, right?"
He already knew what was going to be at stake: our family and each other.
That night, after Lily's first CT scan and her first dose of steroids and her first MRI with sedation, I drove home to let our dog out and get clothes. I remember thinking that somehow in a few hours I had become an entirely different person. I was just a mom of a toddler going in, but driving out, I was the mom of a baby with brain tumor.
At home, I accidentally tripped our security alarm and was so out of my mind, that I did not know if I did it or if someone had been in the house. It felt like I'd been gone for years instead of hours. I asked the local police to come out, while I stood in my yard, on my cell phone, wondering if I'd ever escape the feeling of being under attack.
I haven't. That's the thing with being a parent to a child with cancer. When your child lives, which is the outcome you've obviously prayed for, childhood cancer and the war is brings to your doorstep is forever. I think the same can be said when your child dies--and I cannot pretend to speak for grieving parents--but grief is forever. This is a war we are fighting---one for our children and one for our friend's children and one for the children with cancer we don't know.
It is relentless and the only play is to be just as relentless back.
But, anyway, that drive to CHOP is something unlike any other drive. I remember when we left in June 2007 after one month in that place and feeling like a criminal. I remember the first time I drove past CHOP on my way to the Alex's Lemonade Stand Foundation offices to start as a writer. Driving by to the office that funds the research that will cure childhood cancer, filled me with such robust, intense joy. I remember all the days driving back and forth with all my kids in tow, when Lily had PT or OT on campus or an MRI or an oncology follow up. I remember arriving via ambulance in 2019, when Lily's shunt failed so catastrophically. And then arriving by car this last time around and of course, following up today.
Today, it occurred to me that soon Lily could make this drive on her own. And soon, she'd be discharged from CHOP and move to Penn. All that adulthood we've prayed for will be here. I don't like thinking of passing the reigns of the drive (and all baggage that comes with it) to Lily. But I absolutely hate, with every cell in my body, the thought of her not growing up. This is the time we prayed for--she'll have to carry on the war herself.
And we will always be here. The burden has always been hers; it just that now that we are not supposed to carry so much. And I know she is ready. I know she is smart and capable (of anything). I don't like the thought of training my daughter for war; but she has been fighting her entire life (minus 14 months) just to live.
I know she can do it: she can make drive on her own.