Tuesday, July 29, 2008

It's a Wonderful Life

OK, this won't be all I hope, that I take the time to post about the conference but, I wanted to check in really quick with those of you who were waiting to hear about it.

First of all I loved flying! I was like a little kid--I kept giggling and looking out the window and taking pictures, so I will post a couple.

I saw a few sights with the little time we had. We saw the St. Louis LDS Temple, beautiful.

And we went to the Arch (of course) and rode the tram to the top so I took some pictures from up there, 630 feet high up there.

And I found the way to the Hogwarts Express at Platform 9 3/4!! (cool painting inside the mall that was inside my hotel that also included the ballrooms where the conference was held--it was all VERY convenient.)

As for the conference, it was one of the single most incredible educational and life altering experiences in my life--seriously. I want to go out and conquer the world and let everyone know about Fragile X Syndrome!!!

I learned so much about Fragile X Syndrome and its many accompanying traits such as: hyperarousal, anxiety, night terrors, speech delays, perseveration, inclusion in school and so many other things. I think the main focus at least for me was on hyperarousal. It is so often misunderstood as a low attention span or lack of eye contact which often leads to a autism diagnosis.

But, one of the most amazing experiences was the speech that was a panel discussion with 4 young girls (ages 17-28) who were there to tell us their stories and answer our questions. I cried the whole time--what an inspiration they were. Standing there as Full mutation Fragile X Syndrome females testifying to us the power of knowing what they have and how to deal with it, move forward and make the best with what they are facing. One of the girls, pictured with me (the blond to the left of me) said, "When I was in high school I feared that FXS would label me and that I would lose sight of who I am; I learned that Fragile X does not define who I am, I define who I am." So powerful, I hope that 2 will have this fantastic attitude. All four girls have been going to college (with lots of help), have their drivers licenses, and jobs. Then I met a woman who is married and has a son with Fragile X and it was only then that they discovered that she was a full mutation Fragile X!!! She never even new, no one would have known! She, I hope, will continue to stay in contact--I love her to pieces. Amazing, truly amazing.

There were so many other kids there with Fragile X, it was so wonderful to meet families who were in my same situation!! I will especially remember JP, he is a 23 year old young man with FXS, he said I was hot! What a sweety he was, he even danced with me several times at the Banquet/Auction/ dance! His mom has written a book called "Love is Spelled with an X" -- it is memoirs of her life with JP. I want to read it. They were a great family to get to know, (thanks guys for letting me sit next to you at the banquet)!

I am so proud of 2 and 8 and also, so proud of 12 and 16 because of the love, patience and compassion they have for 2 and 8.

What I truly learned is that I am blessed. Amazingly blessed. My family, close and extended, my friends, and neighbors are such great supports! I love you all and appreciate you so much. I have a wonderful husband who works so hard right along side me and the kids. 12 and 16 who were thrown into the middle of it all and do a great job. I am blessed. What a wonderful life!!

5 remarks:

Suzy said...

It sounds awesome. Also, my sister is in London right now and got her picture in front of a wall that looks like the Hogwarts picture. Small world!

brookiebaby said...

Wow! What a time! Sounds like you had fun AND learned a ton! A great combination! I can't believe how high-functioning those girls on the panel were! Driver's license is VERY impressive! It's nice to see people succeed like that!

Candie Miller said...

It was great to read about your experience at this conference---it is always encouraging to hear about kids who, despite a disability, can lead a somewhat "normal" life!--Awesome!

Ethington Family said...

i am glad you are having fun, learning lots, and feeling blessed. you are wonderful rach- and am sure proud of you!

Clare Dunsford said...

As the proud mother of J.P., the young man you danced with, Rachael, I thank you for your kind words about him and our family. We loved having you at our table, too! My memoir is titled "Spelling Love with an X: A Mother, A Son, and the Gene That Binds Them"; it was published by Beacon Press last fall and can be found on Amazon and other sites. Here is the web site for the book: www.spellinglovewithanx.com

I'm so happy you enjoyed the conference. I have been to 4 or 5 and they always leave me feeling part of a larger community of wonderful people. I bet you're a wonderful mother, and your kids are very lucky to have you!

Best wishes, Clare Dunsford