Thursday, August 27, 2015

To Write... or not to write?

Well, I am feeling a little bit silly because when my last post was featured on The Mighty, the last line states that people can "follow the story" at this site... and there is only one post. Hmmm...

Ever since the birth of my daughter, I have contemplated writing about the different emotions I have had or different situations we have been in; however, it is a difficult situation to write about. Not because it is a difficult topic necessarily, but because of how it could effect her future. My daughter is not her diagnosis. If I continually write about her diagnosis, what does that say? What happens as she grows older? What will she think about her Mommy writing about all her doctor's visits? Will it impact her social life? I want so badly for her to find her own path in life, with as little meddling from me as possible.

Obviously, I have chosen to write. My hope is that I do not embarrass her (there are plenty of other ways to do that...) with my writing, but that she can see the love that is behind the writing. In all honesty, I wrote that last piece in fit of frustration. After writing it I thought about it, and decided that I could not possibly be the only one with these thoughts. So I hit the "publish" button.

As for the future, we shall see! Hopefully I will continue to find time to write- as I do enjoy it. In the meantime, feel free to educate yourself on DiGeorge Syndrome- it is almost as common as Down Syndrome and yet it is still thought of as rare. There are over 180 different anomalies that can be attributed to DiGeorge, which makes it difficult to diagnose at times. Everyone with the syndrome is effected in a different way- just like no human is alike, no case of DiGeorge is exactly alike either.


  1. I will follow you... Follow you where ever you may go, oh oh oh oh.

    There isn't an ocean too deep, a mountain so high it could keep, keep me away.

    1. Thank you... for always making me laugh. :)

  2. My son also has 22q11. 2, he is 4 years old, and the paper work I have to do is horrible for school.

  3. My daughter is 9 and has VCFS. Most of her hurdles are behavioral or show in learning/speech/OT delays and not medical and I find myself wondering if I am contributing to the labels she might carry....but we have to tell people like teachers, Sunday school leaders, therapists, babysitters...and I just want them to love her as much as I do. Seems easy, right? But so difficult because I am challenged by her behavior at times. I just want you to know you aren't alone and you helped me to feel the same way.