I’ve touched on the many challenges of having a child with significant special needs, and they are many. Some days, they weigh Caleb and me down more than the weighted blanket I lay on Caleb when he is having a particularly challenging day. Some years, the challenges are 364 days. I have found, however that challenges are interspersed with amazing gifts, like a daffodil growing in a field of choking weeds.
Caleb has been blessed by a phenomenal Make a Wish trip, many wonderful day camps, teachers who teach with the passion of the truly committed, and kindnesses that spring up unexpected, like the aforementioned daffodils. Today in church, when the usher asked a young couple to scoot over a few seats so Caleb and I could sit on the end of the aisle (I never know what might set him off, so this is a necessary precaution for everyone), the couple moved, but looked quizzical. After we slipped into our seats, I whispered to the husband that my son has autism and we need to be on the end in case something upset him. This young man put his arm around me, and said, “No problem, we are so glad you are here.” I would have wept at those words when Caleb was four and a bundle of crying, screaming, flapping nerves. Today, I just let the warmth of those words wash over me.
On February 13, The Tim Tebow Foundation, supported by the Heisman Trust, is hosting “A Night to Shine:” a prom for kids over age 16 with special needs. There is no cost to any of the guests. He promises a red carpet, royal treatment, tons of volunteers and lots of dancing. Typical of Mr. Tebow, I haven’t seen any mention in any media. It will be hosted simultaneously at 50 churches across the country. I have long been an admirer of Mr. Tebow. Caleb has an old University of Florida number 15 jersey that no longer fits but I can’t part with. I have a Broncos number 15 shirt that I won’t ever donate. People can say whatever they want to this non-football fan about his skills on the field, but off the field, there is no better player. Tebow’s enormous faith, positive attitude and love of life shine on his face and he’s humble on top of that. This event has dropped me to my knees.
Caleb has asked his favorite girlfriend to attend with him and she accepted. Sophie and I took Caleb to a tuxedo rental place today. For the first time in his life (he’s been a ring bearer and junior groomsmen before) he was allowed to choose his own accessories. Caleb was ecstatic and chose a gorgeous sapphire blue vest with matching paisley tie and Sophie introduced him to some awesome striped socks in varying shades of blue. When I went to pay, the clerk looked puzzled for a moment, then she said, “There is a $50 credit for anyone attending this function.” Tim Tebow thinks of everything.
What is it that makes people who have no family members with special needs voluntarily enter our otherwise almost-apocalyptic world? I don’t know. I don’t know that without loving Caleb I would ever venture into this sometimes scary field. I was approached decades ago about working with mentally retarded adults and I can’t tell you how fast and far I ran from that offer. It terrified me. That experience helps me remember when people aren’t kind to Caleb that they are not so different from me. To quote “Frozen,” we were “born with” this situation, rather than “cursed.” From the very first moment I held this precious child in my arms, I didn’t care what the situation was—I only wanted him to feel loved and accepted and cherished. How unbelievably lovely that people who’ve never had the enormous pleasure of interacting with Caleb are moved to make him feel the same.
I loved watching Sophie spirit off to the two proms she attended. It was almost a rite of passage, something we looked forward to for a very long time. I never, ever even dreamed that Caleb would attend a prom, let alone one that promises to be absolutely amazing. When the tab for the tuxedo came due, even with Mr. Tebow’s help, it was still a rather hefty sum. Sophie asked if we could afford it, and I answered that with Caleb we are never guaranteed another year and we have to take joy where we can find it. If you think about it, none of us are guaranteed tomorrow, but it’s more pressing with someone with as many health challenges as he faces. I responded to her that this night will be a reprieve for Caleb, a time when he is accepted and celebrated by everyone and allowed to be a teenaged boy who gets to dance with his favorite girl.
It makes me wish that everyone who has felt marginalized, left out, or alone would get this opportunity. Sometimes being labeled as having special needs allows Caleb to walk in a field of daffodils, if only for one night. And most times, it is more than enough to carry us through the dark months to come.
Neverland Without a GPS 