5 mins before I was due to leave for the recent 21 mile charity run the watch band on my Garmin broke. After dragging my husband (who can usually fix anything) out of bed at 6am to look at it and declaring it was unfixable in 5 mins, I had resigned myself to the fact I would be running without a watch and had nothing to check my pace. As a last resort I thought I would try the old faithful duck tape and naturally with 3 kids the only tape I could find was bright purple. When did duck tape become a fashion statement?
A couple of wraps around the wristband later and presto, the watch was back on my wrist and I was out the door to head to the run. As I sat on the bus to Hopkinton and pondered over when the next opportunity would be to get my watch fixed before marathon day, my mind wandered to my very special patient partner Ben and the time we first met.
“Want to see my Cuckoo Clock?” were some of the first words Ben uttered when we first met him. A bundle of energy, inquisitive, affectionate and funny he greeted us at the front door with a huge smile and couldn’t wait to show off his room with the special cuckoo clock he had received as a gift. Ben bounced (literally) from room to room and especially on his mini trampoline and if you did not know any better would have assumed he was like every other 3 year old.
Ben was born with bilateral congenital cataracts, micropthalmia and micro-cornea. Cataracts which many people will know are abnormalities in the lens of the eye that cause a loss of transparency. Congenital cataracts affect infants or young children and are considered to be a rare birth defect. Cataracts tend to cause cloudy vision, and, in many cases, may result in blindness when left untreated.
Microphthalmia syndrome is an extremely rare inherited disorder characterized by abnormal smallness of one or both eyes and or droopy eyelids, resulting in visual impairment.
Although Ben is visually impaired and wears thick glasses and a patch, he also wears a big smile every day. He loves music, dancing, swimming and running. He told me his favorite color is purple and he loves the letter “O”.
As I sat on that bus and looked down at my watch and the 20 odd times I looked at it during my race that day to check my pace, I could only smile and think of Ben when I saw that purple tape wrapped in an O shape around my watchband. Ben’s confidence, resilience and remarkable ways to adapt to his significant challenges have only inspired me in my training and leading up to the marathon and to continue to raise awareness for the rare disease community.
So the watchband will stay broken and the purple tape will remain on and every time I glance at my watch on marathon day will remind me of Ben and inspire me every step of the way to the finish line and beyond.
Ben, Liam and Zara Poole and Ben’s big brother, Jake