When I saw the request for volunteers it said something like “this event is the highlight of the year for the attendees, so please come out and help with the Night to Shine.” I didn’t know whether to laugh or cry.
I mean, in our house, we try to have a good time all year long! While it is a good time at Night to Shine, and we do look forward to it, it is not the only event of our year. Our daughters love our family vacations, family dinners, holidays, Double H camp and lots more! If you know our girls you know they love life…and many people. Also, if you know our twin daughters, you know they are both very different. One craves crowds with lots of activity and the other prefers one on one time. It’s the latter one I was concerned about as we headed to this prom started by Tim Tebow.
As I caught her eye in the rearview mirror I commented to her that she could find quiet places to visit with friends during the evening. I began coaching her on manners and ways to enjoy the night when she interrupted me with “I’m fine tonight, mom!”. In my mind I said the words “we’ll see”.
And it didn’t take long before I did see! What I had were two daughters over the moon with joy.
And immediately I thought of the advertisement seeking volunteers. I wondered if I had been too sensitive and if it really IS their favorite event of the year. But when I watched longer I saw what was happening: Each new moment, and around each new corner, brought someone else special to our daughters. That next person was met with squeals of joy whether they had just seen them last week, last month, or not since last summer. Here, under one roof, were so many of the people that they love. People who mean so much to them throughout the year.
Their buddies for the night were friends from their unified bocce team. All around them were people from Joni and Friends camp, their Bethesda Disability Ministry group, running partners from Ainsley’s Angels, friends from Bingo, friends from church, friends who feel like family, and others who have fit into their lives through school, therapies, and everyday life. (My goodness, you people know how to represent!)
They knew they were surrounded by love and about to meet more friends. It reminded me of my story I was asked to share the week before.
I was asked to share about faith and disability for an upcoming museum opening downtown. (More on that another time.) It took about 6 weeks, and an equal amount of edits, to boil my thoughts and experiences down to three shareable minutes. But ultimately I had walked through several key thoughts in the process. And now I wonder if my daughters have already processed life similarly. In the previous week I had relayed:
- “God doesn’t give us more than we can handle” is a fallacy that well meaning people use to offer us hope. It’s probably a twisted misquote from Corinthians, but it is NOT a Bible verse. Unfortunately I believed it for the girls’ first 18 months of life. I thought I needed to handle things or God would be disappointed and I would have failed.
- I turned away help all the while becoming bitter. It was not unlike Elijah who told God it was more that he could handle and he wanted to die. Meanwhile an angel came and brought him what he needed saying it was ALL TOO MUCH for him. (Check it out in 1 Kings.)
- As we discovered how the spirit intercedes for us, we became open to those who were the hands and feet of Jesus. It’s hard to be vulnerable and feel like you might only take and never give. Looking back we see how He has woven us together to become part of a much bigger plan than this present moment. It’s beautiful being surrounded by a circle of support.
- It’s beautiful, but it’s still hard. Sometimes life affected by disability feels enormous…even impossible. Well meaning platitudes do nothing to get me through, but the people do. Because of this, I sometimes make a list of the names of those who have reached out to us. I use it remind myself I’m not alone. Don’t allow yourself to go alone, it is too much.
And there it is. The Night to Shine is a visualization of that list… and my daughters knew it.
Their joy that night was knowing that we aren’t alone in this. Now, a day later, the high is wearing off and reality has set back in. I imagine it has for the thousands who worked the event, too. I know they’re exhausted from the prep and clean up. Let me share a secret with you: in the respite rooms parents and caregivers share they are exhausted from this work everyday…and there is no end in sight. Some were not there in the respite rooms, they were using it as the one free date night they could grab or a chance to get work completed. Others were hovering in the auditorium, helicopter-mom style, getting energized for another day by watching the group having a great time and being loved by others. Still more were present, ready to swoop in when behaviors crashed, and safely ushered them home early.
Today I am looking at the memorabilia, Facebook photos, and make-up smudged pillow cases while thinking, “Please. Don’t forget us!”
Please be the visualization of our lists. The reminder we aren’t alone in this. Your time, mentorship, love…it matters! Let’s not make Night to Shine the EVENT that sustains my daughters and their friends until next year but, instead, a gathering of people who are a part of our circle all year long.