Getting him out of bed in the morning typically takes multiple attempts and a variety of approaches-literally and figuratively. I start with the quiet, gentle approach – silently walking in, whispering ‘good morning’ to the darkness, and try to locate his cheek amidst the tangle of blankets and pillows and an occasional small-but-furry dog. If I’m greeted warmly, I continue to whisper encouragements. If not, I retreat and try again later.
This Saturday morning was no exception – except that when I make my first ‘fly by’ attempt the sun was beginning to rise and, as he gruffly reminded me, it wasn’t a school day.
“If Cathy can get herself out of bed, load up her wheelchair and get there on time, so can you. You’re not going to let one little leg cast stop you, are you? Now get up. We’re going to be late.”
He grumbled and groaned about why we had to leave so early when the walk didn’t start til 10, but I wasn’t in the mood. Every day is a gift, I reminded him, and he’d better make the most of this one. And remember – it means everything to Cathy to have you there. And she even has a cape especially for you.
By now he was awake enough to process, and realizing the importance of his presence, cast and wheelchair and all, he scooted over and thunked his heavy left leg to the floor. “Ok, ok. Just give me a minute.”
I smiled and backed out of the room. Mission accomplished, for now.
By the time we pulled into Raley Field, all fifteen teens and parents were ready for action. The energy was palpable, and the emotions flowed synchronously with the beat. ALS is a devastating, debilitating disease, brought to national attention last summer with the infectious “Ice Bucket Challenge’ fund raising campaign. But that’s not how we know ALS. Two years ago ALS walked (or rolled) into our lives with the gift of Cathy Speck, a vivacious, feisty and blunt-in-the-best-way-possible spirit who has become both a friend and a paragon of living life every day, in every way possible.
When Cameron met Cathy at school as part of his Peer Helping class, something magical happened. What could a thirteen-year-old boy and a XXXX-something-year-old woman connect over? That’s the real gift here. It’s between them. Maybe it’s her straight talking approach and honesty about dying that intrigues him. Maybe her sarcastic, sassy sense of humor? Her positive attitude about life and living? Lately, I wonder if his ‘broken’ body and fractured dreams have offered him new insight and compassion. I’m not sure that anyone could witness her indomitable spirit and zest for life, even as she’s dying, and not want to learn from her.
I knew she had arrived as soon as I saw the half-dozen bright yellow smiley-face balloons hovering above the crowd. The kids ran for her with the gusto of a crowd smothering a rock star. She’s that beloved, I thought. This isn’t something we see every day at school. This is something extraordinary. Within minutes she called me over. “Jennifer, I have his cape,” she smiled as she handed the turquoise blue felt to me. STOP ALS, it read. We’re trying, I thought. She was ready to roll, so I quickly tied it around his neck and watched as he settled back into his wheelchair and smiled as his friends jostled to be the first to push him into the crowd.
All around us thousands of folks rolled, walked and skipped to the infield and began the triple loop of support. Banners and balloons and costumes marched around the track, following Cathy’s chorus of “Hey, hey, ho, ho, ALS has got to go”. With every pass by home plate I looked around and breathed and took it all in – the azure blue of the sky, the scent of sunscreen and happiness, the smiles and laughter and love walking and wheeling along side me. The 15-year-old boys supporting Cam as he wheeled around the first base line, Cathy’s life-long friends gently holding an umbrella over her head, Cameron’s teacher and her son mixing with parents, teachers, and kids in a sea of adoration and support and extraordinariness on an ordinary day.
Every day is a gift. It really, really is.
This post was inspired by The 13th Gift by Joanne Huist Smith, memoir about how random acts of kindness transformed her family’s bereavement and grief during the holidays. Join From Left to Write on October 28th as we discuss The 13th Gift. As a member, I received a copy of the book for review purposes.