In the first hours and days after Mary Cate was born the internet became my best friend and my worst enemy.
Google, wikipedia, webmd.. soooo much information to digest, information that I didn't "want" to know, I scoured the internet to find a website that said that Apert Syndrome would be cured after just a couple of surgeries and she would go on to live a happy and healthy life free from excessive medical care. I still haven't found that,but I have also finally stopped looking.
Some of the information and pictures were way too much to handle in those early hours, but in an age of iPhones, the world is at our fingertips, and not easy to ignore.
That first night of her birth we wrote an email informing our family and friends about Mary Cate's diagnosis and what we were told to expect. After I hit send, I looked at Chris and said "How the HECK did people do this 20+ years ago?????"
We could not have imagined calling people to explain it all. We could barely utter the word Apert without turning into a sobbing mess. How did people do this over and over again before internet and email. This has been been our main mode of communication to friends, family, colleagues, neighbors and even strangers whom have been drawn to MC's story!
Since those early days, the internet has been a lifesaver. Through it, we have been able to find the surgical team we will be using in Dallas, and the support networks of families with Apert Syndrome as well as other craniofacial syndromes.
We enjoyed a WONDERFUL afternoon yesterday with a few other Chicago area CCA gals (and their families)...all thanks to the internet! :)