Sara Talks about Vines & Vibes
August 26, 2018
On October 11, 2017, Do It For the Love sent our family to see Katy Perry in Brooklyn, NY. My son Tim has mitochondrial disease, which makes him legally blind, hearing impaired, speech impaired, robs him of balance and motor control, and has given him seizures. Mitochondrial disease can be progressive and fatal. He has a twin sister Evie—and both are turning 13 this month. The twins and I have been big fans of Katy Perry ever since her album Prism. While their dad Damian has never been a big fan of pop music, Tim and Evie and I would rock out in the car to Roar and Dark Horse whenever he wasn’t there!
My son walks slowly and falls when he can’t see well or keep his balance. In fact, we didn’t know when he was younger if he would ever walk (I had to hold both hands and hold him up as he walked even when he began Kindergarten).
It has been a long road and he has longer still to travel, but the generosity of both Do It for the Love and of Katy Perry’s organization made an incredible impression on all of us. That night, we had failed to get a parking pass and so had to park a good ten blocks away from the venue. It is hard to believe that the boy who had to be held up by his arms was now racing along the streets of Brooklyn at night, using his reflective long white-and-red cane to find cracks in the sidewalk (though I still hold his hand with a vice grip). By the time we made it to our seats, the big red ball at the tip of his cane had broken and fallen off, but it didn’t matter—he had a date with the girl he had sung along with so many times, bopping in his palsied way to This is How We Do.
As we had waited at will call, we even got approached by someone working the show. She noticed my son’s cane and the big plastic leg braces he wears and asked if we would like a place to sit down. We were all way too excited for that, but it was a moment of kindness where a kid who struggles is not invisible—even in the technicolor world of jumbo sensations that is a Katy Perry show in a massive arena.
Incredibly, when we found our seats, we were in the ninth row, so close to Katy we could practically feel the long silver tassels on her headdress as she soared on the rings of her own native planet over our heads. We could see her strut from the stage along the catwalk and, though I tried to point out where Katy was, Tim couldn’t always find her. He did enjoy seeing her on the big screen (which was a more predictable location) and the comically bright props like larger-than-life pink flamingos and red lips devouring Katy were flashy signposts to where Katy was, even if he couldn’t see her cocky smile and expressive batting eyes.
We all danced feverishly to our favorites—even my folk rocker husband Damian—like Roar, a song which had won him over at the Super Bowl with its empowerment message for girls. There were many times during the evening when I couldn’t hold my gratitude for what both your organizations had done—Firework set off the waterworks for me.
And it was hard to believe that the boy who could at one point not even form a word perfectly could now tell them at the t-shirt kiosk after the show, “Ten ah haff duh Taty Peh-wee t-shewt in medium pwease?” It was their first rock concert ever and I know they will never forget it.
The night before we went to the concert, we watched the movie Part of Me. We got to know Katy and her compassion. She was in tears over her personal life, but still wiped her eyes and got to her feet because she didn’t want to “miss the meet and greet.” We did not get to meet Katy that night, but her big heart was in the show and we felt like we caught a bit of it as her planet orbited over that of our family in the ninth row singing “Thinking of You.”
Sometimes, more than a cure, we need the healing that comes with being witnessed and acknowledged—that this life is not easy, that we’re “just looking for a witness in all of this…just looking for a witness to get (us) through this.”
Darcie Whelan Kortan is a writer and has chronicled her family’s story raising a multiply disabled child in a column for Literary Mama: http://www.literarymama.com/columns/beyondbroken.