Let me start this post by saying I KNOW how lucky I am. I know I married an amazing man. I knew it the first few times I was with him. I knew he was different. I knew from the start that this man was going to make a wonderful father and very loving and faithful husband. I knew very early on that I was going to marry this man. My parents knew that he was different after our first date. My mom told me I glowed. Then when they met him for the first time and Both of them liked him. I knew this was for real. That this man was a REAL man. I knew when he wanted to take me out again after the first time he met my father that it was going to last. You see, when Mike met my dad for the first time my dad was dressed in a tank top, bathing suit, cowboy boots, a coon skin hat and he was examining his double barrel shot gun. Yes ladies and gentlemen Mike asked me out again. We have since April 1st 1995 never taken a break from each other. He then and always will be the last person I want to say goodnight too every night. When he FINALLY asked me to marry him of course I said YES!! Again, I know how amazing this man is. He makes me whole, he makes me feel loved, he makes me feel special, he makes me feel like I am the only woman in the world, he makes me feel sexy, he makes me feel secure and makes me feel these things every day, even when I don't deserve it.
We don't really fight, ever, its weird really and we ask ourselves often if we are normal. I cannot remember a time we have ever had and argument that was resolved quickly. In our relationship like every other one we have had ups and downs of course. We have had hard times. One of the hardest was when Hayden was diagnosed with Fragile X syndrome and we found out I was a carrier. He could have walked away. He could have said it's too hard. He could have told me to deal with it and been unsupportive. He never did, he held me while I cried and grieved. He told me there was no body else he wanted to be with, no matter what happened. No matter what we were in this together. Whatever Hayden needed we would tackle it together. We would face every challenge united. We would and we do stand together as the first line of defense against all of the Fragile X heartaches that come our way. We stand united in triumph as we witness the miracles of Fragile X. I cannot imagine life without this man. I cannot imagine what it would be like to not have such a supportive partner.
I am always proud of Mike. He always make me proud to be his wife. Today however my pride swells a little bigger as it does every year for the last 5 years at this time. Today Mike is in Washington DC for the National Fragile X Foundation's Advocacy Day. He will tell our story and make requests on behalf of the almost 1 million Americans living
with a Fragile X Disorder. Tomorrow he be in several meetings on Capitol Hill where he will tell our story to help make the future a better place for Hayden and for me. He won't do this alone. He will be surrounded by almost 200 advocates that will share their own stories of the people they love so much. They will all stand together to bring awareness and funding for Fragile X. Almost 200 members of our Fragile X family will take part in one of the most important and emotional days that they have ever been a part of. From the bottom of my heart I thank you, all of you!
So yea I know I married the most amazing man. I am thankful every day for it. Some people say that their spouse makes them stronger. I disagree with Mike I don't have to be strong. I can be weak because I know he will be strong for me. I can stay in the security of arms and know everything will be ok, that he will forever have my back. When I have to be strong I know that he will make me strong. He will always be my biggest fan and give me the confidence I need to take on the world. I am a very lucky lady. He is the most amazing man I have ever known and I've known some pretty great men. I love you more than I will ever be able to express to you Mike.
Tomorrow is also spread the word to end the word day. If you want more information check this out.
I cannot express enough gratitude for the family and friends who over the last few years have told us they no longer use the "r" word. Its mean everything to us. To the family and friends who have apologized because they have used it in front of us, I thank you. To some it may seem really small but to me it's huge. Every time you use it you are making fun of somebody with a mental disability. If you would like a list of words you can use in place of the "r" word let me know. I'd be happy to send you a list.
Just a side note Hayden will be participating in his first Special Olympics Event on Friday. Is it appropriate to paint my face and write his name on forehead? Is it tacky to paint his name all over my car? Be prepared for FB to blow up with pictures because Mike and I will both be there with our Faces Painted...ok maybe not but there will pictures, lots of pictures.
We did get the results of Cynthia's sleep study and more tests are needed. For now I will leave it at that until we get more information. Please keep her and our family in your prayers as we await more results.