As promised in yesterday’s post, Share your stories of thanks, here’s a column I wrote for The Kentucky Enquirer in 2013. Written, in part, to raise awareness about epilepsy, it needed a little editing to suit today’s purpose, but it still stands as a thank you letter to the community. Your story may look nothing like this, and that’s fine. I offer it as an example only if you need one.
Please refer to yesterday’s post for guidelines to submit your stories of thanks. The deadline is Nov. 11. Contact me if you have any questions. I look forward to reading your stories!
A particularly good day
Epilepsy lives at our house. We’ve asked it to leave, begged even. But it is a stubborn, cold-hearted monster that makes life challenging, to say the least. So when a particularly good day happens upon us, I soak up the warmth for as long as I can.
A recent Saturday was a particularly good day.
I headed into a bustling Boone County weekend with my daughter, Anna, who has a severe epilepsy called Dravet syndrome and associated special needs. Often when I’m with her, we are movie characters caught in slow motion while everything around speeds past. She moves at her own pace, and I’ve learned, agonizingly, that no amount of rushing or pleading will change that.
Sometimes the slow pace is the residue of seizures. They occur mostly in her sleep these days, but in her early years they struck all over Northern Kentucky, dropping her to the floor or the ground at school, church, the bowling alley, restaurants, playgrounds, soccer fields, the library, swimming pools, dance class.
On that particularly good day, though, not a seizure was in sight.
Our first stop was the office of the Boone County Cooperative Extension. Here Four-H agent Christy Eastwood took time out of her morning to work with our St. Timothy Church group of families who have children with chronic physical, intellectual or behavioral challenges. The group gathers regularly to support each other and have fun, and on this Saturday Eastwood played games with us to teach about food groups, how germs spread and proper hand washing.
Then she showed us how to layer vanilla yogurt, granola and apple pie filling into a sweet and crunchy parfait. As she shared her knowledge, patience and enthusiasm, Eastwood gave us time to relax and enjoy each other.
The parfait didn’t fill Anna’s tummy, so next we scooted into a booth at a Burlington Pike restaurant for lunch with friends, including another girl with a type of epilepsy that slows life down.
Our attentive and kind-hearted waitress quickly realized that we sat apart from the lunchtime bustle swirling around us. She waited patiently while the girls decided on chicken nuggets and grilled cheese.
“Do you have any coupons?” she asked.
We did not. But she did. And she gave us two for the girls’ meals.
I still can see that waitress’s smile.
Next on this unusually busy day, Anna and I headed to Introduction to Martial Arts for Special Needs, a class offered through Boone County Parks & Recreation.
We walked into the echoing Maplewood gym in Burlington and met instructors from Tri-State ATA Martial Arts. Master Marge Templeton and instructor Chris Jones worked with Anna on kicks, punches and the use of nunchucks. They spoke gently, offering instruction, encouragement and praise, especially at the strength of her kicks. Anna was so proud of herself that she burst out laughing.
Yes, our recent Saturday was a particularly good day, a day warmed by the kindness of strangers. I wonder if the people we met that day have any idea that their patient acceptance of a child is a true gift to the child’s parents. I wonder if they realize how much gratitude grows from their simple acts. Maybe now, they do.
Special Needs Northern Kentucky 