Songs, smells, and foods take us back to particular days and times. It’s Unforgettable (Nat King Cole) or almost every song on the ’90s on 9 channel, ocean air, and black licorice for me. They invoke nostalgia, bringing a warm and fuzzy feeling, almost as if you are being embraced by a memory.
Yet, in epilepsy parenting, days, events, and special occasions often do the opposite. Invoking stress and trauma, almost as if you are there back in that moment, wishing away the memory of such an awful experience. Easter, Thanksgiving, Christmas, vacations, the first Monday of kindergarten…..the Eagles winning the Super Bowl.
As a lifelong Philadelphia Eagles fan, who lived in Beantown for several years, February 4, 2018, was a day I had long anticipated. I never wavered all the years I lived in Boston, or Title Town, as those who live there often call it. My love for Philadelphia sports, specifically the Eagles, remained steadfast. And though my little lady was born in the heart of Boston and spent the first few years of her life in Southie (South Boston), Reagan’s blood runs green. So we were pumped, jerseys on, green fingernails, and a school-made Eagles “hat”; it was our team’s time to shine.
Here’s the thing about epilepsy, it doesn’t care. It doesn’t care that it’s Easter, Thanksgiving, Christmas, vacation, kindergarten, or that your team finally made it to the biggest game of the year. It just doesn’t care. Those days, associated with joy and celebration, carry a different meaning for me now; they are tainted. That day, February 4, 2018, started with much anticipation, the Eagles fight song on repeat, and ended with a little girl sidelined while I sat alone watching my Birds do their thing. I often think of that day, the complexity of my emotions mixed with one of the greatest joys, sadness, and anger. I wanted to be out running up and down my street, I wanted to be screaming at the top of my lungs, but it just didn’t feel right.
Here’s the other thing about epilepsy, when you are young, you don’t remember that these special days were taken from you. So on that day and all those special days, I, as the parent, was the one who felt cheated. I remember those days they live with me. But with age comes awareness and starting to associate days with the good and the bad. Thanksgiving, car rides home from the grandparents, loud Christmas music, Friday night movies, gym class, they’ve all been tainted now and live in me and in Reagan too. With most of these, you get a do-over, a chance to change the core memory from blue to yellow. But with these once-in-lifetime things, there is not typically a do-over. Though it seems odd, the Eagles returning to the Super Bowl feels like we get a do-over. A chance to celebrate, a chance to say, “Remember when the Eagles won the Super Bowl?!” without the caveat of but you were sidelined (by epilepsy).
So give me a V, dot the I, curl the C – T – O – R – Y, VICTORY, VICTORY! Give me, give Reagan, the day, the day for normalcy and celebration, for victory. We want this for you, for us, every Philly fan, and those who know what it feels like to be sidelined. Go Birds!
My thoughts and original post from February 5, 2018:
Resilience, it’s what true champions and warriors are made of. When faced with a challenge, you stand up and fight, even after being knocked down time and time again. The Philadelphia Eagles proved this to be true, but so has this little girl. Though she was born in enemy territory her blood runs green. For the past few weeks, Reagan has been signing the Eagles’ fight song daily. Jersey on, green fingernails, and anxious for the big game, accompanied by playtime with friends, and boom. She was sidelined yet again. Seizures strike out of nowhere, taking her from anticipated moments and huge events. While she was able to watch one touchdown drive her little body was weak and needed to recover. Today, she is back in the game and the smile on her face was priceless when she heard her team won. Resilience isn’t taught, it is in you. You, kid of mine are as tough as they come.
***Just this morning Reagan asked how much it would cost to go to the Super Bowl, keep your dreams big kiddo!***
Rea of Hope 