Monday, September 15, 2008

A Website, for All of my Fans

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.


Dreaming again said...

Welcome to the Blog world!

I just may take you up on the offer for algebra help. I'm clueless!

I've been reading about Margret, her story has touched me deeply.

I'm the mom of a special needs kiddo as well. I've blogged about him frequently in the many years I've been blogging ... his story is peppered throughout my blog. As is my frequent fights and successes with the school system.

My son was never supposed to walk or talk, he was born with some brain malformations. Thankfully, we had a neuro who didn't believe in 'supposed to's' ...and didn't bother to tell us this prognosis ..and just ordered physical, occupational and speech therapy. We fought ... and worked and his progress is remarkable, nothing short of miraculous.

He still struggles academically, but socially he's on target. At almost 17, he definitely has delays and situations where his issues are of paramount importance that need attention ... and yet ... what shines through this child is his remarkable leadership skills and joy for living.

Those who don't deal with special needs teens or have to deal with him on an academic basis, don't realize that he has issues.

I've taken up enough of your commenting space. you can search my blog for his story's by searching for Benjamin, A Mother's Heart (a poem I wrote about him) or Swamp Plant and a Cactus, those search terms on my blog will bring up the better posts about him.

looking forward to reading more about you and your journey.

femail doc said...

Wow, the contrast between the attitudes of your doctors at Margret's birth is astounding. I would like to think attitudes like the pediatrician's no longer exist. Wonderful explanation of Eisenmenger's syndrome. Welcome to blogging; what a remarkable way to connect with people. And they say the Internet is impersonal! I'm in awe of how personal it gets.

Ann of the Incredible Gift said...

dreaming again: Thanks for stopping by!
For the algebra, we ought to hook up via one of the messengers. I will go have a read about your son shortly.

femail doc: Thank you for the Welcome!

Yes, the two docs at Margret's birth were like black and white. I did have the pleasure, quite a few years later when I ran across the pediatrician's name, of calling him at the institution where he was teaching(!) and telling him all the things Margret could do, that he wrongly predicted would be in the "Never" category. Like playing Scrabble, even if it was with small words, and adding up her score (sometimes by herself, and sometimes with a little help).
*grin* A lot of people like my explanation of Eisenmenger's. I broke it down into little bits so I could explain it to Margret and have her understand what was happening in her own body. Useful talent, restating an explanation in simpler terms.

Tammy and Parker said...

I so wish I could have had the pleasure of meeting your Incredible Gift in person.

Thank you for giving me the opportunity to meet both of you through your blogs.

Ann of the Incredible Gift said...

Thanks for stopping by, Tammy.

I, too, wish you could have met her. She would have adored Parker.

lady jicky said...

I have just found this site and I am so sad I missed my chance to talk to Margret.
I too have Eisenmengers VSD - my hole in my heart went unnoticed and my family doctors just said I was Lazy etc. As a teenager I got fed up and we went to the hospital for tests. Yes , it was too late .
I was told I would not live very long but - I am 53 this year. I am on oxygen for a few hours and the medications for pulmonary Hyper. do not agree with me. I am happy and involved in life - like your Margret was. I only wish I knew of her blog sooner.

Ann of the Incredible Gift said...

Dear Lady Jicky,

I am so pleased you are doing well. 53 years with an unrepaired VSD is way beyond excellent!

I am also sorry you missed your chance to talk to Margret. I did not start this blog until after she passed away, but her website (and the message board associated with it) has been in existence since June of 2004.

Have you been to PH Central or the PH Association web sites?


both have resources for patients and families. Both sites also have a chat. I don't remember the chat schedule though.

lady jicky said...

Hello Ann.

I live in Australia but through the internet I have meet others with the same problem as I have. When I was young I thought I was the "only one" - just know others like yourself is such a joy. Sad but true and I bet margret thought that way too.
I have a good life and adopted and I am now a grandmother. I have lived to see it all and I am so lucky.
Thinking of you,
Melinda Lady Jicky