Saturday evening, Hailey and I hosted the first ever, Epilepsy Foundation Kids Crew World Changer Celebration. The virtual event honored 21 amazing kids who earned all 8 of their Kids Crew themed activity pins in 2020. These kids are truly inspiring and have gone above and beyond to make a difference in their communities.
Although the event was virtual, planning sill takes time and is a team effort. Allison procured the balloons and designed our backdrop. Since the beginning, she has used her creative talent to make sure the Kids Crew looks its best. Hailey took care of inviting TIME’s 2020 Kid of the Year, Gitanjali Rao, to speak to the kids. Gitanjali was a part of Marvel’s Hero Project with Hailey and they have become good friends. Hailey was also my co-host as she is for every Kids Crew event. She brightens the screen and inspires people whenever she speaks to them.
My day was spent finalizing our presentation, graphics, and music. I have organized many virtual Kids Crew events over the past year and I still get excited for each one. I have to admit, I had my fair share of butterflies for the World Changer event. I wanted to make sure it was worthy of what the kids had accomplished.
When it was over, Hailey and I high-fived and sat back to relish what had just taken place. My heart was overflowing with joy and pride. Many of the kids who attended the event deal with difficult challenges in their lives. Some were supporting their siblings. Others needed help from parents to participate because of their disabilities. There were even those who have no connection to epilepsy but are involved because they want to learn and give back.
I completely understand the feeling a teacher has when their class achieves a collective high test score or the exuberance a coach exudes when their team wins a championship. They are walking on cloud nine because they have fully invested themselves in making life better for their students or their players and watching them achieve excellence is a rewarding experience.
In this case, I felt so much more. I am intimately familiar with what it’s like to be a parent watching your child struggle with a health condition. Many of the big life moments are replaced with smaller steps. So when there is a reason for honoring an accomplishment, you don’t hold back. As I sat there perusing the squares of smiling faces on the screen, it’s as if I was sitting next to each parent routing on their child. I felt like I was a part of their celebration sharing in the joy they radiated. At a point during a song performed by one of the kids, I gently took Hailey’s hand, looked at her with tears welling in my eyes, and softly whispered, “This is incredible.”
The typical ending to a Kids Crew event is to get up and dance, sway to the music while seated if the child is unable to stand, or to have a parent help the member groove to the tune. On this night, we selected “Footloose” to close out the evening. I have no shame in saying that I still adore music from the 80’s. I know there are a number of Kids Crew parents who feel the same way I do. Many songs from the decade are now used in memes or played during gym class by PE teachers which means that kids today are familiar with much of the music from that time.
For those four minutes while we strutted our stuff, there was no talk of epilepsy, seizures, facts and figures, or changing the world. Anti-seizure pills, EEGs, therapists, and doctors were momentarily erased. Gone was the trials and tribulation of being bullied, their condition stigmatized, and the feeling of being alone. They were simply kids being kids connected by the thread of a common beat accepted for who they are. It was a fitting end to a wonderful evening where they could be fancy-free without a care in the world. It was glorious to behold.
