Today I went to Scratch cupcakes and got four cupcakes: carrot, chocolate brownie, chocolate peanut butter, and princess. After that I swung by Fareway and bought Cheetos.
Tonight, we celebrate Grace’s 14th birthday. She may refuse the cupcake but what matters is that we tried. She hardly ever refuses Cheetos.
Today I really let myself think about her turning 14. It’s been in my head and on my heart but sometimes in order to keep going I just can’t go there.
On her actual birthday, all I could handle was to post a Snapchat I took that afternoon of the two of us. The only caption I wrote, all I could write, was “14”. It felt disrespectful somehow to remain quiet on her birthday. A post I’d written for Graham’s birthday had poured out of me quickly not that long ago.
Leading up to her birthday I found myself singing “Seasons of Love” to her from Rent. The song questions how to measure the life of a person. Should you measure in minutes? In laughter? In the number of times you cry? Ultimately the answer is to measure a life in love.
Fourteen years in minutes is 7,358,400 minutes.
Seven million + minutes Grace has been with us.
She rarely laughs and hardly cries.
I don’t know how many seizures she’s had. If I really counted there’d be no way to get out from under the weight of that number.
I probably should have kept track of the number of EEG’s – I haven’t.
I know we snuggle every day we are together. I still hold her 14-year-old frame on my lap- it’s not as comfortable as it used to be. At times though it is the only thing that calms her down.
We could measure in the number of pills we give her. The number of cardboard boxes of supplies that come through our house. The number of meetings. The number of therapy sessions.
She’s about to start her 9th year of dance.
We could measure the days in the hospital. The number of appointments. The number of trips to Minnesota. I could go on, but I need to reign it in. I need to get back to love.
My love for the girl who we celebrate is large, overpowering, stifling, inspiring, magical, growing.
Mr. Rogers said “Love isn’t a state of perfect caring. It is an active noun like struggle. To love someone is to strive to accept that person exactly the way he or she is, right here and now.”
Though there has been struggle I have never not loved Grace in the last 14 years. In fact, I think love is what made it possible to be where we are tonight.
Tonight, we are celebrating a girl who has rocked our world, brought peace to it, brought perspective to it, and made it so much bigger than I knew was possible.
Rock on Gracie girl. We love you!
Originally written the afternoon of January 31, 2020.