HOW THE FIRST DAY OF MY BOOK LAUNCH SHOCKED ME
I came across a website where a parent had compiled a long list of links to other parent’s websites – sites that parents had put together to chronicle their child’s journey living with a rare disease. Connor’s journey with Syndrome X, Miranda’s blog of Living with Syndrome Y. Emmy, Addison, Taylor – the list went on and on. Dozens and dozens of links. Great! How convenient, I thought to myself– I will click on each of these and tell them about the book, ask them to share it with their friends and family- what a find!
And so I started clicking on the links. One by one. Link after link. Some were broken. I got error messages. Some hadn’t been updated in years– detailed entries about little Jacob’s journey – his doctor’s appointments, his parent’s hope for this treatment – and then that treatment – suddenly halted a few years ago –with nothing thereafter. That happens, I figured. Parents are busy people, and parents of kids with rare diseases are especially busy. It’s a lot of work to maintain a website. The kind of thing that can just fall to the wayside. But then I looked more closely. Sometimes, it was on the sidebar. Other times, it was on the bottom of the page. Or so subtly placed on the page that it was easy to miss. But there they were – on these pages that lingered like ghosts, years after the last entries were made – links to memorial pages. Redirects to tribute funds. Requests to donate on little Emma’s behalf. Celebrating Christopher’s life. Remembering Alexander. Those last entries, followed by silence, and then by those links. Entries sharing consultations with specialists, treatment regiments, debilitating pain and suffering – parents’ desperate attempts to save their child’s life – their hope and heartache as they watched their child struggle on a daily basis with a disease that was slowly killing them- followed by links to memorial pages and funds.