Wednesday, March 2, 2011

Wow is all I can say about the week I'm having and how long it's taken to update this blog. Sorry about that. Some of the blogs I read are so good about it and I always think man I gotta update ours. That said today I write this blog on an amazing day (not that I don't think all days are amazing). But today is Fragile X advocacy day. What is advocacy day well to put it simply (I stole it from FB (thank you Shannon). Today, Fragile X advocates all around the country are meeting with Congress to help secure funding, advance research, and spread the word about Fragile X Syndrome. Mike is one of those advocates. I don't have to tell you how blessed I am to have such a great daddy for our precious little boy. I don't need to tell you how proud I am that I get to be his wife. God has touch our lives in so many ways. He has given us life, hope, support and has put amazing people in our lives to nurture and guide us. A good friend who has just recently come into my life reminded me of this bible verse Jeremiah 29:11 "I know the plans I have for you," declares the Lord "plans to prosper you and not to harm you, plans to give you hope and a future." This road that we are on is a long and sometimes painful but I will never again question that God is with me. I may not understand all the why's. I will someday. I promise to Look at each and every blessing I have in my life daily to be reminded of this. I am grateful for this amazing man that God put into my life. I really can say I married my best friend. I am grateful for the little boy that calls me mommy. He never ceases to amaze and humble me. Just this morning the sweetest thing happened. At 3:10 am I hear his little voice saying "mommy" "mommy" thinking it is in the first thought was oh no we are not getting up at 3:10 in the morning. I turn to get out of bed and there he is looking at me with that sweet little face and sleep eyes. I say "what do you need buddy, you need to go back to sleep" he then climbs into my bed, get's comfy, steals one of my pillows, pulls my face to his chest and goes back to sleep. This is that small reminder that my life is so good!! Now to many of you that may be nothing. Your kids may sneak into your bed every other night. Hayden never has. He loves his own space and doesn't want to share it. So this was very rare and way special.

Today is also what is know as spread the word to end the word. I hate this word, I hate when it is used in a clinical setting and I hate it even more when it is used as slang. It's the one and probably only word that makes my stomach sour. Imagine with me if you will the little boy at the top of this page being called retarded. You don't like it do you? Now lets take it one step further and imagine being that little boy's mommy or daddy and having to hear it over and over again in an IEP. Because that is the label they gave him. Not Fragile X but mentally retarded. Imagine how sick it would make you if he was your child. Imagine what it does to Mike, myself and the many other parents who have children with special needs. Imagine what it does to us when we hear this word used in slang. I ask you as family and friends of the little boy at the top of this page to stop using that word. Today is a great day to pledge to show respect to people with
intellectual disabilities, their families & friends. Take the R-word out of your vocabulary and then spread the word to end the word!

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