A guest post.

The main reason my life is so sweet is that I get to share it with this man. He is an amazing dad, an amazing husband and an all around amazing person. I think you will see why Monkey and I love him so very, very much! 

~Umma

I don’t sign in and post on here often, but today is a special occasion. Today is National Fragile X Awareness Day. I remember when we first found out about Monkey and fragile X syndrome I really didn’t fully accept it, nor did I know anything about it. I thought that it was something we could overcome. It was something that wouldn’t change us or our family that much. Then it set in, our life was going to be different. We were going to have to work hard to see him walk, crawl, talk. It took us so long to connect with other families who had fragile X-associated disorders touch their lives that I started to wonder what would happen to some of my dreams. What about normal accomplishment, would he ever hold a job, drive, finish school, go onto college, play a sport, go snowmobiling with me?

I still remember when Monkey first started walking, it was a huge celebration. Then he start talking and we would celebrate every new word, even if it was months between. Even now, he’s mimicking my phone calls and it just lights up my day. Every little accomplishment is a huge celebration, no matter how long it takes to get there. We continue to work hard for Monkey and push him beyond his comfort level so that he can continue to amaze us.

Is every day a breeze? Definitely not! We have struggles; we’ve had days or evenings where we can’t go to the children’s museum, aquarium, amusement park, zoo, etc. Or we get there and spend so little time inside that our parking is free. We’ve had days where it’s a battle to get out of the house, nights of little to no sleep, challenges with the school district over placement and services. Do I wish live were easier, sure, but then there would just be something else. Umma recently said, “He has fragile X syndrome, but it does not have him!” and that is so true.

Monkey is an amazing child and part of it is because of fragile X syndrome. He has changed me. He has given me the drive to help change the world, help raise awareness for Fragile X and make sure there are plenty of opportunities for all of those affected to live full, satisfying and productive lives. I am lucky enough to have a job which allows me to help raise awareness for all of the fragile X-associated disorders. We are also a part of a larger Fragile X Family and have many amazing friends. We now know that that all of those normal accomplishments can be reached and we will work to get there!

6 thoughts on “A guest post.

  • July 22, 2011 at 7:21 pm
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    I am so glad you share Monkey with us. I’ve been watching (reading) and learning from you. Probably the biggest lesson I’ve learned…enjoy the differences. Life with James has never been easy and I doubt it ever will (for many different reasons) but I have learned, maybe a little too late, to enjoy those things that set him apart from others.

    THANK YOU BOTH for all you do!!!

    Reply
  • July 22, 2011 at 7:38 pm
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    I have twin boys w/ fragile x syndrome and there are the light of my life and it has not always been easy but i’m so greatfull for them and thankyou to everyone whom i’ve been fortunete to get to know and hope to know better who i’ve met through facebook ur all awsome and you are all heros.

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  • July 22, 2011 at 8:26 pm
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    Exactly what i was thinking. Thank you.

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  • July 22, 2011 at 9:10 pm
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    You said the exact words that I think everyday.

    Reply

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