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I DON'T UNDERSTAND PEOPLE, PART 2
18 June 2006
I am so angry as I sit here that I am actually shaking.
There was a time when you could walk city streets and feel safe.
There was a time when you could let your kids play unsupervised in your own yard and feel safe.
There was a time when you could wave your kids goodbye as they walked to school and feel safe.
There was a time when you could leave your car somewhere and feel safe.
There was a time when you could put your life on the Internet and feel safe.
At a moment in time when I am about to enter into a project which will attempt to encourage people to get involved with blogging and, more specifically, with video blogging I am suddenly unsure about what is "safe" any more.
For the safety of all concerned, I am only going to mention first names, and give no indication of where this has happened because ... well because I suddenly don't feel safe any more.
Those who have read this journal for any period of time know that I have been following the escapades, adventures, and the ups and downs of journaler Rob. In the early days of my journaling life I stumbled across his journal. I don't remember exactly when that was, but at the time his wife was expecting their first child, and he was worried about what kind of a Dad he was going to be.
In the intervening years, reading first, off and on, and then regularly, I followed the birth of young Schuyler in the late 1990s...
...and her early days, watching Rob turn into the loving father I always knew he would be.
I watched the delight the parents had in their new daughter and then the growing fear as this delightful little girl continued to grow, but didn't speak. I remember Rob once writing that he'd give everything to hear Schuyler call him Daddy.
I watched videos of Schuyler, who was obviously a healthy, happy little girl who adored her Daddy, but who just didn't have the words.
As she continued to grow, it became apparent that this was just not a delay in development, but something more. Doctors were consulted. Specialists were consulted and in the end, they identified Schuyler's "monster," Congenital Bilateral Perisylvian Syndrome (CBPS), an extremely rare neurological disorder which I understand--sort of. Basically, it means that Schuyler will never speak. Can never speak.
I watched Rob and his wife deal with the news the way any of us would--perhaps better than most of us would. They have become fighters for their daughter, determined to give her as normal a life as she can possibly have, given her handicap. (I am reminded of my friend, Georgia Griffith, who was born blind, became deaf in her 40s and, at the time I met her, was unable to walk and so crawled or used a wheelchair. Yet she ran seven of the most profitable forums on CompuServe and supported herself. She always insisted that she was not "disabled," she was "handicapped--like in golf.")
They moved to a place where she could attend regular school and they investigated the kinds of helps that were available for her, including what has come to be called her "big box of words," a machine which gives Schuyler a voice. The BBOW was very expensive and Rob asked his readers for assistance. Many of us chipped in and he raised enough to buy Schuyler a BBOW.
There are those who didn't like Rob much for asking for money, but I think those of us who have received so much enjoyment from being silent partners in the raising of Schuyler, who have enjoyed Rob's writing, and who have appreciated Rob's candor and his willingness to be so open with Schuyler's life felt that we were willing to pay something to help her lead a more normal life.
And so Schuyler got her Big Box of Words and we all smiled as we watched how she proved all the experts wrong and learned it faster than anybody expected. It seemed like she had lots to say and though she has always seemed outgoing and happy, the BBOW allowed her to blossom. Rob's recent entry about the first time Schuyler was able to order her own food at a restaurant, and the patient waiter who allowed her to do it, brought tears to my eyes.
But apparently the days when you can talk about your handicapped little girl and revel in the progress she has making and feel safe are no more.
This is what I read in Rob's journal today about messages he had removed from his guestbook:
What kind of sick people would write something like this? Where does the hate come from that would threaten to attack a beautiful little girl? Where does the hate come from that would subject parents to the kind of fear that Rob and his wife must be feeling right now?
I don't care if you don't like Rob. I don't care if you don't like Schuyler. I don't care if you think it's tacky that he has asked for funds on the internet, this is beyond acceptable. This is nothing but hateful, malicious, and downright cruel.
I'm not one of Rob's "group." We don't chat in e-mail. He's younger than David would have been. We've exchanged maybe 3 or 4 e-mails in all the years I've been reading his journal, so he's not a personal friend, but like others I "know" from the net, he feels like a friend, and I feel very protective of Schuyler.
The problem, however, of course, is that there is absolutely nothing
I can do about this. Except long for the days when you could put your life on the
Internet, talk about your kid and know that people enjoyed reading you ... not have to
worry that someone was going to attack your little girl some day because you dared to
share bits of her life with the world.
PHOTO OF THE DAY