They say that life is a highway and its milestones are the years,
And now and then there’s a toll-gate where you buy your way with tears.
—Joyce Kilmer (“Roofs,” 1917)
September is all about milestones, with its back-to-school firsts and the excitement of new beginnings. This year we have a special milestone: After 40+ years in my childhood home, including 14 years raising our family in it, the Andersons have moved! That house was a home base we had only ever planned on expanding, but Hurricane Irene five years ago, then Sandy a year later, was the beginning of the end. We began to mourn our home then, but we never could have imagined what was yet to come. I’ve learned a lot in the past five years about “the best laid plans.”
On July 1, 2008, Lily LaRue Anderson (“twin B”) was born—naturally and epically, butt first and fists flailing—seven minutes after Brady Cooper. I had greeted each of my three prior babies with a proper “Happy Birth Day!” but I asked this one, “who ARE you”? I did not know it then, but this was to be the ride of my life.
Still, it wouldn’t be fair to say that this is the date that defines me, since no one ever prepares you for the dates you never knew existed.
The date of diagnosis.
The date of radiation, chemo, mask fittings…
All the dates of every single MRI.
The day something changed.
The day she couldn’t walk.
The last day she said my name.
The day she died: April 6, 2015.
All these days make me.
Lily LaRue was diagnosed on May 4, 2014. We were in Hershey, Pennsylvania, celebrating Kentucky Derby weekend (as we always did) and she fell at the pool. We wanted to make sure she could go on roller coasters the next day, so we took her to the hospital. (We hoped no one would think we were silly, overly cautious parents, and the irony of that is NOT lost on me.) It was there that we were introduced to “the room.”
The room may be different for everyone in its geography, smell, or shape, but we all know that room. It’s where they took us to tell us they’d found a lemon-sized mass in Lily’s brainstem. No, there were no symptoms. No, she was FINE. No, do it again, you’re wrong…
We traveled thousands of miles in her remaining 337 days seeking a cure, and we would have traveled a million more. We researched and reached out from a place of acute and overwhelming confusion and knowledge, in a place and time we never knew existed. Pediatric cancer. Brain tumor. Cannot remove. “Cannot cure it, Mrs. Anderson…”
Yet somehow we never lost hope, and in our travels we came across the people who were “right” for the time. I had been asked to speak at a brain tumor foundation gala, and Jeff Greenfield came up to me in the parking lot later and said, “I think we can do something.” In the days that followed, I found myself in correspondence with Mark Souweidane and his office. Mark and Jeff may not even recall all the moments and conversations, but I remember everything, and my loyalty and support will always be fast and firm. Always.
I would be lying if I did not acknowledge the milestone that changed me forever, and that stays with me always. With all my days and dates and moments, all profound and impactful on my heart and soul, there will always be one day, hour, and minute that severed me from my “before.” All those other dates I keep in my heart merely shadow the framework of April 6, 2015, at 7:01 am. The day that marks me, that represents all my sad, worst days of remembrance and memory, has made me better.
How is that possible? How did I not die, too? But is HAS helped me help. Has made me see my path. No, I am NOT “okay.” Time hasn’t healed a thing. But…somehow, someway, I AM better because of her. Her example, her essence. Her story in my life. Her everything… My unicorn. My Lily LaRue.
September is not just back-to-school anymore for some of us, those with one less backpack to shop for. Now it is #gogold and Pediatric Cancer Awareness Month (which, before cancer, I never realized existed). And now we LIVE and FIGHT for this. Now and ALWAYS. Broken, as only parents who have been through this can be or understand, yet better and stronger together than apart. We ARE the Children’s Brain Tumor Project. We are proud and honored to be with you, “Powered by Families.” Always. I use her #yellyvoice to continue and be THE change.