I thought maybe my love was some sort of Stockholm syndrome--we had been captives of a brain tumor for weeks. We were held against our will. We moved to the rooms we were told to move to. We ate what was given to us. We waited with bated breath for news, visits from therapists, procedures and whatever else the hospital had in store for us. We were kidnapped.
I used to believe that my love of this time stemmed from a sort of adoration I developed with our kidnapper. CHOP and all its team provided us with life for our daughter: therefore, I adored CHOP and adored being its captive.
But, really, I never, ever want to be back on the pediatric oncology floor.
When we were trapped at CHOP, something remarkable happened. The only thing that mattered was the health of Lily. Everything else dropped away. There was no time to worry about taking out the trash, preparing reports for conference calls, doing laundry or anything remotely "normal." All that normal stuff, all that noise, went away. We were forced to hit the pause button and for those 4 weeks at CHOP, we were still.
It was the first time that anyone ever gave me permission to care about just one thing-my child. From the moment I was pregnant with Lily, I lived distracted from Lily. I was pregnant, but I had to work; I had to ensure everyone knew I was committed to my career. At home, I planned the nursery, searched for baby names and distracted myself with knitting projects. I never just focused on Lily and only Lily. When my sweet girl was diagnosed with a brain tumor, finally, I felt what mattered--finally I understood and so did everyone else. My focus was singular--heal Lily.
At CHOP, I remember waking up each day, fearful of what horrible thing might happen, but feeling focused and still. I had no where to go. Mike was asleep in a chair; Lily in her hospital crib. I remember spending afternoons on a gym mat in our oncology room, working with Lily and my "Itsy Bitsy Yoga" book. It was Mike's idea. We taught Lily how to sit up again. Lily taught us how to stand tall and face everything--no matter how evil or dark. We taught Lily how to conquer her vertigo--a side effect of having your cerebellum severed. Lily taught us how to untie our hearts and open up fully to God and to faith.
Those were dark days. Those were also my best days--days that I will forever remember with fondness. That pause, that quiet focus--that is where God is waiting for us to listen.
Pauses are remarkable. Pauses are still, but not stagnant. They are quiet, but not silent. Psalm 46 says: "Be still and know that I am God." Thich Nhat Hanh writes, "When we are still, looking deeply, and touching the source of our true wisdom, we touch the living Buddha and the living Christ in ourselves and in each person we meet."
Lesson 3 (or 3 million)from the mom of a brain tumor survivor: find the pauses each and every day. Take 1 minute, be still and ask: so, what's next? And then listen.