One summer, I asked daughter Margret what she wanted for her birthday. Today's title is what she replied: "I want a website, Mom, for all of my fans."
Margret has been a fan of music personages like NKotB, N'sync, Backstreet Boys and Ricky Martin. She's familiar with the celebrity web sites, and the fan message boards. And she wanted one for her fans. When first she said it, I was amused. I hadn't really considered that she had fans. The more I thought about it, the more seriously I took the idea. Making a web page for her, after all, is well within my capabilities. And, it would make her happy.
I asked her what she wanted on her web site. She wanted a picture of her, and her name, and a place where her fans could leave messages. Oh, yes, and she wanted me to explain what Eisenmenger's Syndrome is, but say it just like she was telling the story. And she wanted a page all about Down Syndrome. And pictures of her sisters and stories about them.
I managed the photograph, and the explanation of Eisenmenger's syndrome, and the guestbook for a start. She was pleased. She already had messages in the guestbook. I read them to her, and she glowed with pleasure.
We went off to see her doctor again, and she talked about her web page. The doctor told her the explanation of Eisenmenger's was very well done, clear and accurate. I admitted to the role of ghost writer for that bit, and this doctor, Dr. N, asked me if I would come and do the lecture on Eisenmenger's for her medical students. I'm fairly sure this was a compliment, and not an actual offer, so I demurred on the grounds that I didn't have any teaching credentials, and that might be a problem.
I mentioned her guestbook to several friends, and they mentioned it to other friends, and presently she had lots of messages. I read them to her, and she wanted to reply to most of them. Some of the signers had not left an email, and were one time visitors to the website, so I suggested a message board where she could have a better chance of her replies being seen.
Soon we had a conversation that went something like this:
"OK, I added a message board. Here are your messages; (and I read them to her) What would you like to say in your reply?"
"Oh, Mom, you can say anything you want," and she took herself off to take an afternoon nap.
Feeling somewhat flummoxed, I didn't make very many replies. Why didn't she want to reply for herself? Don't know. She always managed to avoid giving me an answer to that question.
I never did get to the explanation of Down Syndrome. There are plenty of websites you can find by using Google that are quite good. I hesitated a bit about the pictures of her sisters, and wondered if telling stories was a good thing. So that got put off. I've put up a little bit of biography about Margret herself, and I'm thinking of expanding it a little at a time.
Oh, yes, and Margret asked me to write a book about her, about growing up with Down Syndrome and health issues. I told her she would have plenty of time to tell all those stories herself, and arranged a little voice recorder for her to use. Somehow she never made the time to record any. I think she was too busy living new ones to bother.
Maybe someday I will write her story out. Maybe. Only maybe.
Want to see her webpage? Click here.
3 weeks ago