The ‘Net makes this a smaller world
Published 11:59 pm Tuesday, April 21, 2009
There’s a neat feature on most Internet home pages that allow you to get “alerts” sent to your e-mail account any time a certain topic is mentioned.
I have four sets of these alerts — Covington County, Andalusia, Florala and Treacher Collins Syndrome.
Each morning when I arrive at the office, I have a ritual. I put my keys and phone in my dish (so I can find them if I have to rush out the door), grab police reports off the fax machine, then a paper off the front counter before settling in to read my e-mail.
Nowadays, more often than not, I’m treated to inbox filled with Google alerts about TCS. One would think there would be more about Andalusia (after all, there is also one in Illinois, and a whole region in Spain), than Covington County and then Florala. Not so.
And with technology the way it is today, more families across the world are beginning to tell their family’s story when dealing with the congenital birth defect.
Sometimes they are so sad.
Today, a blog on Pocket Knifes and Best Pocket… (http://www.knife-lords.com/) was written by a 17-year-old girl *who posted her college admissions essay. In it, she details living with TCS.
She writes, “When I look into the mirror I see myself, but I don’t. The person I face is disfigured. She has visible scars on her neck, hands, and underneath deep sunken eyes, not from misadventures of childhood but the cold steel cut of a surgeon’s knife … she is someone I don’t really know, someone who has faced trials that I find difficult to remember, someone I respect and someone I dread.”
Another alert tells readers that today is Cameron’s birthday. Cameron’s story is posted on the blogspot called “Living with Orphans.” He lives in China.
A couple weeks ago, I got a notice about Juliana Whetmore, who has been featured on the Discovery Channel. She lives in Florida, but somehow her story weaved its way into headlines in The Detroit News.
Another gives a glimpse into the life of Sydney who lives in California. She just had ear reconstruction — the next-next procedure on the Nelson to-do list.
It’s next-next since we’re going Wednesday to have Mia’s latest procedure done.
We’ve already begun making the needed preparations … hotel, check; arrangements for the oldest girl, check; gas money, check. On and on to get ready for the trip to Birmingham. This trip will be a little different than others before. This time, instead of one child in the operating room, we’ll have two. Not to worry, the youngest girl is scheduled for a wham-bam procedure to remove a lodged ear tube.
When folks ask why to do the two surgeries together, the answer is simple — one trip to Birmingham. “Work smart, not hard,” is my motto.
I know that somewhere this column will pop up on a Google alert, and it could help us all remember we’re not in this alone. We are one of many, each with our own story.