Dads Night Out

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

August Update

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

FXAM 5k Fun Run & Walk

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.

God Bless

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

Fragile X of MI 5k Fun Run & Walk

On August 10th my wife and I will be participating in the Fragile X of MI 5k Fun Run & Walk. This is a great event to help raise funds to support Fragile X families in MI going to local and national conventions, helping our local support group, and funding the National Fragile X Foundation for testing and research.

We have set a personal goal to raise $1,000 for this event - and already through July 8th we have raised or had committed to our fund $1,320 !! It is truely astounding - and the prayers, well wishes, and words of encouragment have been amazing.

You all are truely angels - God Bless you all !!

If you stumble upon this blog and would like to support us as well - please send an email to ourfxjourney@gmail.com for info on how to donate.

The Fragile X Factor

A great article in Time Magazine this month about Fragile X.....

http://www.time.com/time/magazine/article/0,9171,1818268,00.html

.....really helps explain it in less technical terms.

God Bless.

Moving Forward

I've created this blog to share our experiences, struggles, and triumphs with Fragile X Syndrome. My son Hayden was diagnosed with Fragile X in October 2007. Since that time our lives have been completely changed. What we thought was normal and what we thought our life would be is nothing like what it actually is or what it will become.

What we have learned though in the past few months since D-Day "diagnosis day" is that our lives have not come to an end - but yet have only begun. Each new day brings it's own set of struggles and challenges - yet each new day also brings the joy, excitement, happiness, and the true blessing from God of being parents to in our eyes the most wonderful and special child in the world.

It is a struggle, but each day we move forward - each day is better than the previous and each day is to be cherished to its utmost potential. In the past few years - and especially the last 12 months - I have learned that nothing is to be taken for granted because it can all change without your approval. As I write this first post I make a personal commitment to live each day to the fullest and to move forward when life knocks you back.