Friday, October 23, 2009
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.
Wednesday, July 22, 2009
Today, July 22nd 2009, is Fragile X Awareness Day.
If you read this blog or know me - you know how Fragile X has affected my family. But it's just not my family - it's hundreds of thousands around this great country of ours.
Please visit fragilex.org or fxam.org to learn more about Fragile X and how you can help support research to find a cure.
Tina, Hayden, and I are blessed with the most amazing family and friends. In the past, almost two years, since we received our diagnosis the support and prayers we received is absolutely amazing.
We've learned alot about what Fragile X is, why it has affected us, what we can do to treat it - and I think back and remember asking myself - why me? why us? I know someday I will get that answer. I also know that I need to make the best of everything that comes my (our) way - and I realize everyday how amazing of a blessing Hayden has been into my life.
Sometimes it crosses into my mind "if I only knew ahead of time".....but what if I did know ahead of time....Hayden would never have been a part of my life. So many amazing people I have met would not be part of my life. The person I have become, the strengths I have developed, the passion in my heart that I have would not be part of my life.
It's a struggle, not everyday, but it is a struggle and I know I am blessed to not have some of the struggles so many others do. But I don't regret my life, I don't wish it away, I wouldn't change a thing - because I wouldn't want to not know Hayden.
On National Fragile X Awareness day I have had so many emotions run through me. I really can't explain any of them. I'm actually having a hard time finishing this post - which if you know me, I'm not one to shy away from talking or writing.............
............. God Bless !
Thursday, July 9, 2009
Tuesday, June 30, 2009
Hope you all are doing well - and have a wonderful 4th of July holiday weekend.
Be safe & God Bless
Tuesday, May 12, 2009
On May 11th a very good friend of mine - and my brother in spirit - left and went to defend our countries freedom and help those who have been liberated.
I have never experienced saying goodbye to someone like that. To go off and do that is a bravery and a courage I don't know if I will ever know. I'm a truly humbled.
So please - so a prayer for my brother and for all of our troops who are out there for us.
We have been making tons of progress in the speech and language areas. His letter recognition gets better and better, and he knows all his numbers and most of his colors. Words (and attempts at words) are coming more and more frequent. He will help us say the ABC's...if we say "A" he says "B" then we say "C" and he says "D"...and so on. Maybe not perfect everytime - but we are just making huge gains.
He's also pretty good with the number 3. If we ever have to tell him something more than twice - like let go of the dogs tail - we tell him once, and then say "ok, Hayden...1, 2, ....." and he will pipe in with "3". How do you discipline when it's so cute. He also gets so excited whenever he does something right as far as letters and numbers go - and when we say "good job" he just gets the biggest smile and starts clapping. What an awesome feeling.
Just this week we also had another amazing thing happen. Hayden's OT at school sent us a note home that said he wrote the first letter of his name - an "H" (duh, right?). She wrote it down - and he took a pencil and did it himself. I read the note and got a tear in my eye. How awesome is that.
Soccer started again. Hayden is playing in his second season. First day wasn't all that great - we maybe had a good 15 minutes of actual playing time....he was just so exhausted by the time soccer started. He seems to like getting up no later than 6:30am everyday.
We missed the second day, but on the third day we got a helper that I think is really going to be good for Hayden. The whole soccer program is for children with special needs, and the get kids from the community to volunteer and help out.
Well on this day we got a volunteer who spent the entire hour with Hayden. When he didn't want to actually kick the ball or learn to dribble - his helper would just sit on the sidelines and talk and play with him, tickle him, do just about whatever Hayden wanted. This kid had such patience and just seemed to enjoy hanging out with Hayden. It was great because I actually got to sit back and watch while he played. It was really great having that feeling of watching your kid play sports - even if it was just sitting on the sideline watching the other kids play. We will for sure ask for this helper each weekend.
As mentioned in a previous post we had some worries when it came to the ECDD program in our school district. How such great things can be accomplished when the public pulls together. For over a month weekly emails, phone calls, and meetings with school board members and school administrators resulted in a victory. The district eventually realized they couldn't get rid of special ed programs - but they had also wanted to get rid of the special ed director. Well at the April meeting, the board did not even make a motion to discuss the possible termination of the special ed director. With so much concern from the public - the board acted in our interest and I think for the betterment of the district. We still have some financial issues in our district - but I think they can be worked out.
That's all the updates on Hayden for now. I do want to say a little note for my Buppa (grandpa) who we lost on May 2nd. He had been sick for sometime and had been back and forth between a hospital and nursing home for the better part of the last 4 months. I miss you and love you Buppa...say hi to Nana for me.
Tuesday, April 7, 2009
I've recently heard about a bill in the House (HR875) and Senate (S425) called the Food Safety Modernization Act. As part of this bill, which is supported by the food chemical lobbyists, the use of fertilizers and pesticides will be required to "protect" all food - including organic food. Isn't that the reason many people choose organic food, because it doesn't have fertilizers and pesticides?
When we switched Hayden to organic food - we saw a change in him within weeks. We started getting more sounds and now he is starting to talk. Is it all because of organic - no - his teachers and the hard work Tina put's in is part as well - but we noticed a change in the beginning when we switched even before the intense therapy and we believe the organic food is helping the process further along.
So I urge you to contact your representatives in Congress and ask them to not support this bill. I fear that there is little opposition to this bill in Congress due to the current numbers, and is being led by the same party in power - and we've heard very little about this bill which they are trying to put through with little fanfare.
Thank you and God Bless
Sunday, March 22, 2009
If anyone has any good ideas on how to fight this - feel free to email me - I'm lookin' for a good fight !!
We went to Pump It Up for his birthday party the weekend before.
Unfortunately he got sick on his actual birthday and has been fighting a cold ever since.
Thursday, March 5, 2009
Fragile X Advocacy day on Capitol Hill was one of the most amazing experiences of my life! We had a day of training on the 3rd and then spent all day on the 4th meeting with our state representatives to advocate our agenda. Over 130 people from 35 states attended - the biggest advocacy day yet.
What was even more amazing was he support we received from freshman Representative Harper (R-Miss.). Representative Harper is the first person in Congress to have a child with Fragile X Syndrome. He is a remarkable advocate on Capitol Hill for our cause. Knowing we were all coming, he arranged to give us a private tour on the House Floor. This is the same place the President address joint sessions of congress and gives the State of the Union Address. All 130 of us gathered on the House Floor while Rep. Harper and Senator Delahunt (another champion of FX) spoke to us. After that we got a tour of some of the other rooms in the Capitol. It was an amazing experience.
After the tour we went on to our meetings with our Senators & Representatives. The Chair of Public Policy for the NFXF is from Michigan and it was great going to the meetings with him and learning. I always was disappointed I never got into politics, but now I've found my way - and what better cause could it be for.
What was also amazing was all the great people in the Fragile X community I met. We went out in groups for dinner Tuesday night and it was great being able to talk to people in other states. I was even able to speak with some of the leaders of the NFXF. I learned so much, not just about politics and the process, but also so much more about Fragile X and what is being done.
It was truely an amazing experience - and one I will be doing every year for the rest of my life.
I put a link to Congressman Harper's website that his Public Service Announcement, speech on the House Floor, and other information on the things he's doing for Fragile X.
I encourage anyone who can do it to attend an advocacy day - it is so empowering and life changing. Here is a quote that really means alot more to me now:
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. ~ Margaret Mead
Thursday, February 26, 2009
Saturday, February 21, 2009
We've had some amazing progress over the last few weeks. Hayden is saying (and trying to say) so many new words. It's funny...his speech therapist must touch his chin when she's trying to get him to say a sound...so sometimes when he talks he grabs his chin. Same thing happened when we first tried to teach him to nod his head yes....we would grab his head to show him the motion, so when he started on his own he would grab his head.
But the biggest new thing is he knows his ABC's !! He can't say them - but he can point to each one of them. He has a Little Einstein toy laptop and one of the games is matching the uppercase letter to the lowercase letter. So the game will show lower case "n" and say "find uppercase N" - and he is pretty much right everytime. We have the magnetic letters on the fridge - we say point to "H" and darn near everytime he points to the right one. He's been fascinated with letters lately - he points to them on shirts, in books, everywhere. It's really amazing and an awesome achievement.
This is a picture of Hayden and his "girlfriend" at school Emma. They've become good friends and on Valentine's day we took them to Chuck-E-Cheese. How romantic. His favorite game is Skeeball.
I'll probably have some more updates early next month. It's Fragile X Advocacy Day in Washington D.C. on March 3rd/4th and I'll be traveling to D.C. to participate in my first one. I very excited and looking forward to the experience.
God Bless !
Saturday, January 10, 2009
I've just been notified that I have been chosen to sit on the Board of Directors of the Fragile X Association of Michigan as the Recording Secretary.
This is such a great honor. I'm very excited to be part of this group and look forward to doing whatever I can to help the organization and to make the 2010 International Conference a success.
P.S. This means hitting up alot of people for help and donations......so you have been forewarned !!!!
Great strides in his physical strength too - walking up steps without holding onto anything. Seems like small stuff, but is a great accomplishment.
Alot of progress over the last few weeks - it's really great.
You are probably thinking - what the heck does that mean. Well - on New Years Day my family lost a great man....my Uncle Nick. He was a big guy with a big bark - but was a teddy bear at heart. I have so many great memories of my uncle. The times we shared going to Rocky movies, overnight trips to casino's in Mid Michigan, how he loved the NFL Draft and I would call him every draft day to see how the Lions did, and his famous saying "Read My Lips And Puff Me Bud".
Love you and Miss you Unc...God Speed.