Monday, July 28, 2008

Back from the conference and...........

......wow does my head hurt. :)

My wife and I attended the 11th International Fragile X Conference this past week (7/23 - 7/27) in St Louis. We now think of our life as BC and AC - Before Conference and After Conference. Being newly diagnosed in October 07 we were doing everything we thought to be the best parents we could be for Hayden - and we gave it 110% all the time.

We weren't bad parents - but wow is there so much more to this than we thought. We met some unbelievably dedicated people to the Fragile X cause - therapists, researchers, psychologists, parents, doctors, and the list goes on.....all dedicating their respective talents to helping the kids afflicted by this disorder and in trying to find treatments and cures.

If I would say that I went to a dinner reception 5 days ago and was able to spend time and meet with some of the most high profiled hollywood actors or sports stars - I would have been pretty impressed with myself. Now 5 days later - I can say that I spent time with Paul and Randi Hagerman, with "Mouse" and Tracy, with Marcia Braden - and I would tell you today Tiger Woods who? George Clooney who? Don't get me wrong - maybe Tiger and George to great things for charity - but their lives are a more high profile than the other things they do.....these people we met over the last 5 days - they are my heroes and my sons too.

I became a new parent over the last 5 days. Do I love my son anymore today than I did 5 days ago - not at all - I still love him with every part of my being just as I did before. But something changed in me - and I'm sure it will take time to actually now how that change will manifest itself - but I feel different. I look at my son different. He's no more or less special than he was - but I know so much more about him now than I did before. Maybe that's it - maybe I've become closer with him because I now know more about who he is. I don't know - it was a really strange feeling coming home after those 5 days. It was a new home and new time in my life - this experience was truly life changing. I know my wife feels the same way.

Back in February 2008 we learned about a support group that meets monthly as part of the Fragile X Association of Michigan. This is where we learned about this conference and are so thankful that we went. I plan on becoming much more involved with FXAM and through that probably much more involved in the National Fragile X Foundation as well. There are some advocacy days in March in Washington D.C. to lobby for more funds and research. I've always wanted to dable in politics and this might be my way.

Life is different - it's definitely not the way I thought it would be - I don't think any parent has any plan for this kind of life. But I look forward to every day, to every challenge, to every victory - I know God has a plan for me - I'll be sure to ask Him why it was this plan when I see Him - but He has a plan and without this plan Hayden would never have been part of our lives - and I can't imagine our life without him.

God Bless - Mike

2 comments:

FXSmom said...

It's so awesome that it affected you like that!! Glad you got to go :)

The Wilson's said...

Hi, our son was recently diagnosed with Fragile X in July. I had heard about the conference, but it just wasn't in the cards for us. I would love to hear more about what you were able to learn if you have time to share :)