Friday, October 23, 2009

October Update

It's been a long while since I've posted on this blog - and oh how things have changed in our lives. I truely can't believe that it's nearing the end of October. The year has just flown by.

Yesterday was October 22nd - X-Day........exactly two years ago we received my sons diagnosis of Fragile X Syndrome.

I sat down yesterday a bit and just reflected on what the last 2 years has meant. I still remember that frantic first few hours of finding out about Fragile X and "googling" it and just the shock and fear I felt. I still remember those first few months just not knowing what to do and just walking around day after day lost and confused.

We've come along way since then. Attended our first Fragile X International Conference, got involved with the Fragile X Association of Michigan, became a board member of FXAM and now a member of the Public Policy Committee for NFXF. Assisting in hosting the 12th International Conference in Dearborn, Michigan and attended my first FX Advocacy Day this year. Fragile X is a part of our lives - and we are not going to let it be a negative. We are going to fight everyday not just for our son but for all the children and adults who are facing this disease.

Everyday I am inspired. Hayden has come so far this year. In January we were really struggling to get even a few words - and today, he is just constantly talking. I can't tell you how many times a tear has come to my eye when I've heard a new word. His school, private speech classes, and therapy camps were just unbelievable this year. We still have some speech struggles - certain letters or sounds - but to hear your child say Momma & Dadda......I just can't think of a better sound.

Just a few weeks ago we went to Chicago to meet with a FX specialist - Dr Berry-Kravitz. The short of the appointment is that Hayden is developing right along the same lines as most children with Fragile X. He is ahead in some areas and behind in others but all-in-all she doesn't see any major areas to be concerned about. We also recently were at a fund raiser with Dr Paul Hagerman - another expert in FX - and he was very hopefuly on new therapies and drugs in the next 3 - 5 years. These are my heroes - these are the people who have dedicated their lives and research to helping others.

The biggest change in our lives, however, is going to happen at the end of March 2010. That is when we will be leaving Michigan and moving to San Antonio, Texas. As part of some changes at my company I was asked if I would be willing to relocate. After much (MUCH) discussion and consideration - we both thought for the betterment of my career, the potential opportunity for our family, and lets face it, here in Michigan, the opportunity to keep my job - this was probably something we should do. We've been to SA once to see the town, look at houses, see some schools - and we were very impressed. It's a beautiful place and has lots to offer not just for me and Tina, but for Hayden too.

We still have some things to work out - final place to live, school, stuff like that. Heading down there another time to look around again and try to finalize some things. One place that we found that is amazing is a theme park that is being built called Morgans Wonderland. This is the first theme park strictly dedicated to individuals with disabilities. Its motto is "A special place for our special friends". Opens early 2010 - so how perfect is that.

So needless to say the next 8 months or so is going to be crazy busy. Holidays, travel, and just the day-to day business that we already have. But I can't complain - life has blessed me with a beautiful and wonderful wife who is just the most amazing person I've ever met. With a son who I just can't put into words how much I love and who everyday inspires me.

Life is good.

God Bless.

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