The one thing I've learned so far in this experience is that we are not alone. For the first few months after diagnosis Tina and I felt so alone - like this has only happened to us and our lives are just finished. We then came across the Fragile X of Michigan support group which has been tremendous, and Tina has made some friends with a couple of the ladies and they do Girls Night Out and other things - which again, is so great because you really spend time with people who get everything you are going through.
Well until last night - I never really found a Dads Group of guys who are going through the same experiences - not that I was even actively looking for one. Through the friendship we have developed with Ted and Mary Beth I learned about a group of guys who gets together in Dearborn at the Futures HealthCore Therapy Center and the gentleman who is volunteering to host the group is Rich Ham-Kucharski. Again - my skeptical self I thought this would be some boring "Hi, my name is Mike and I have a kid with Fragile X" kinda thing. And again - I was wrong.
The center provided pizza and pop and there were four of us - Rich, Ted, a guy we met named Seamus, and myself. We talked about everything - how we handled the diagnosis, what our fears were, how we handle people who see our kids act up, how we handle family, how we support our wives, what our hobbies are, politics, activism, and I could go on - but it was just great to have a group of guys who have children with disabilities that we could just sit around and shoot the breeze with. I thought I would be really nervous - but being part of this "community" the understanding that everyone has for each other is really heartwarming. I mean - we didn't sit around and hug and cry and stuff - we're men for goodness sake :) - but we understand the feelings each other has and it's really great.
I know I plan on going again and I think Ted does too. We learned that Rich was an avid bowler years ago - and of course my Mother owns a proshop - Rip The Rack (check out the link to the side - plug, plug) and we are thinking of maybe scheduling the next Dads Night Out at Rosebowl Lanes.
We have each other, we have Hayden, and we have family who love and support us - and that means the world to us - it's hard to put into words. These people we've met though and these groups we meet with - they are really helping us get through this and to understand that all over Gods green earth - there are people who understand us - and that feels really good too.
God Bless - Mike