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
Wednesday, August 13, 2008
Typically I would send an email out to everyone we know with updates on Hayden and things going on in our lives. Now that I'm a "blogger" I'm going to post those updates here.
So whats been going on? Well one big change in our lives is our eating habits. Tina has done a ton of research about gluten free diets and organic diets and all the chemicals we put in our bodies that come from our food and the effect they are having on us. Well through her research she suggested that we try going to an organic diet - at least for Hayden. I'll admit I was skeptical - but boy was I wrong. Has he started talking full sentences - no - but the progress he has made since we went to organic in just the sounds he makes and his comprehension has been remarkable. He hasn't lost any of the words or sounds he has learned - when in the past he would learn Dada for instance but a few weeks later it was gone. Now he just babbles like crazy which is light years ahead of where we were.
I will say though - organic is expensive. Not so much with condiments and all the stuff you buy just once in a while to keep in the house - spices, canned goods, etc - but meat is crazy expensive. I can get boneless skinless chicken breasts at our local meat market for a bulk price of $1.99 per lb. Buying it organic takes the price to about $8 or $9 per lb. We've really liked going to Whole Foods Market - but there are only two in the area - and they are about a 30 minute drive. One is right near my office - so I'm able to go at lunch now and then to pick up stuff. I tell everyone this - but organic food really tastes better - I was actually very suprised. It has been good not only for Hayden but for Tina and I as well.
Another new thing coming up is that Hayden is starting school on September 3rd. Our school district has started a brand new ECDD Program (Early Childhood Developmental Delay) at the school 6 houses away from us. The Special Ed Director invited Tina to be on the hiring committee for the new teacher which she was very honored to be part of.
We have already bought him a Little Einsteins backpack and I've taken the day off so we can film the whole thing. He will be going 5 days a week for 2 1/2 hours - so it will be a big adjustment to Tina's daily schedule. Alot of new free time - but I'm sure she will really miss him.
Other than that - not too much more going on. My sister and my sister-in-law are both due to have babies towards the end of August. We are looking forward to being Aunts and Uncles again. We pray everyday for them for smooth births and beautiful healthy babies (my sister is having a girl and the other one will be a suprise).
I will sign off with a saying my wife put up on a chalk board in our house:
See your child before you see the disability. This is a child who has more to offer than you ever imagined. This is a child who will teach you more than you ever learned in school. This is a child who will bring out the kind of love in you that you never knew you had.
Amen to that - God Bless - Mike
This past weekend we participated in the 5k Fun Run & Walk put on by FXAM (Fragile X of Michigan). It was another great event to be part of. With the support of so many wonderful people we outreached our donation goal of $1,000 !! The support was amazing and we are so thankful to all who helped us.
The day started out with a Starbucks run because we knew we would need that extra energy - and we found out that Hayden loves Chia Tea Latte's - his Nanie's favorite. I think he drank most of it.
Thanks to Ted and Mary Beth for being so generous at the gate when we got there.
Let me just take a moment to say how wonderful it has been to get to know Ted and Mary Beth - we had such a great time together at the conference and have become close friends - they are amazing people and we are blessed to know them.
The weather was absolutely perfect for a walk - and it was totally not a typical hot and steamy August day - so it was great. We had Hayden in his walking stroller and he had all the amenities - toys, food, books, and someone to push him. Got a little antsy a few times and wanted to walk - which was pretty cool. He likes going for walks with his Mommy so I think he really liked it.
After the walk was the FXAM picnic. Again - another great event to get to know the people in our "community". They had bounce houses and stuff for the kids - it was really great to watch. Tina's Mom was with us and she got a chance to really see and meet all the wonderful people in our lives now.
A great event put on by FXAM and now we look forward to the golf outing in September and then our monthly group meetings start in October. The national conference is in Detroit in 2010 so I imagine we will start planning for that right away.