Thursday, April 4, 2013

Learning to Embrace Life’s Little Moments

Learning to Embrace Life’s Little Moments

By Julie Ufema
View similar stories.
Julie Ufema and her mother visited her cerebral palsy son's school holiday party.The holidays brought me an unimaginable gift this year. One that I never could have anticipated.
My Mom drove in from Maine and was able to join me as we volunteered to be ‘room mothers’ for my son Dane’s Christmas party. She was thrilled. I, admittedly, was apprehensive to say the least.
Earlier this year I was able to spend a day in the life of a kindergartner when my son’s home health aide called off sick, and although an invaluable experience, by the end of the day I was exhausted and happy to head home. But this would only take a couple of hours, and was a party to boot! I love a good party. How tough could it be?

Let the Party Begin

We walked into the classroom and all heads turned in our direction. Everyone now knew that I was Dane’s mom, an avid, amateur photographer and always willing to do something slightly unorthodox to meet my son’s special needs – two things that five-year-olds find highly entertaining.
The ‘head’ room mom announced that we would be making a Christmas ornament, reading a story and then playing some games. That seemed easy enough.
My mom and I set about opening up Popsicle sticks, squirting glue and sticking googly eyes where they belonged. Dane’s snowman looked like it was melting, but he’s never been one to follow the rules and I have never been one to make him.
The story was delightfully uneventful. The children all sat ‘crisscross-applesauce’ and listened with bated breath to find out if ‘Grumpy Santa’ would snap out of his funk and finish delivering his toys to all the good little girls and boys.

Game Time

Next up – the games! Dane squealed with delight and clapped his hands. A moment of terror swept over me. What games? How hard could they be? Dane has cerebral palsy, limited use of his hands and is in a wheelchair. It just hadn’t dawned on me that these ‘games’ might fall slightly outside of his wheelhouse. I so often forget that Dane is any different than anyone else that reality sometimes sneaks up on me.
And boy was this one a doozy! We were to push a Styrofoam ‘snowball’ the length of the classroom (and back!), with a wooden spoon, in an all-out, head to head relay race. When it came time to split into teams, I tried inconspicuously to hang back with Dane. Not a chance. The excited students pleaded with us, “Come on Dane!” “Dane, come be on our team!” “No, he’s closer to our side.  He should be on our team.”
As it had time and time before, my heart sank. I thought quickly, grabbed a piece of paper, rolled it up into a cone and handed it to Dane. “Here,” I said confidently.“You can be the director!”
My mother and the aides looked relieved. That should work for sure! Dane had definitely inherited my bossy pants gene and this should totally satiate his need to participate.
No dice. Out came the lip.
Before the first tear could fall I hurriedly unbuckled him from his wheelchair, mustered up all the strength I could, grabbed my 4-foot, 50 lb. baby boy and carried him over to the end of the line.

Part of the Team

Our turn came. I grabbed the wooden spoon, swooped down towards the ‘snowball’ and gave it all we had. I managed to give the ball one pretty decent whack, and with a couple more awkward and labored dips to the floor, we were just able to stumble across the finish line, dead last, to a raucous round of applause.
As I looked around the room I saw laughter, empathy and maybe just a little disbelief. I looked down at Dane and he grinned ear to ear. Panting, I trudged back over to my mom who quickly pushed Dane’s chair into position. She was smiling too.
She leaned into me, “We could see your bum.” She giggled.
“Won’t be the last time!” I laughed.
And it won’t be. I decided that from that day forward, I would attend all of Dane’s parties, not to protect him from disappointment, but to celebrate the moments that pass too quickly, often unseen by the adult eye. And if I have to show a little bum in the process, so be it. I’d rather teach my kids that to participate and risk looking foolish is always better than not participating at all.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

Join Our Family

Sign up for our free e-newsletter for more blogs, articles, and news about CP kids and their families.

No comments:

Post a Comment