My Not so Normal Life with Crohns Disease
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We can’t fix it but we can sure try!

3/12/2015

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Enjoy this post written by Karen Brocker as she writes what it is like to be the mother of a daughter with a not so normal life.
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If you are a parent of a chronically ill child you know the pain of watching them “miss out” on the things that are happening with their peers.  

My first taste of this was watching a group of Sarah’s classmates going to basketball practice, while I was at school picking up her middle school homework.  She should have been going to that practice, but, instead, was home in bed. That memory has been etched in my mind because it was the first time I had a good look at “normal” and knew that we were no longer in that category.

Over time Sarah has missed out on numerous occasions in her growing up years.  For example, the majority of her spring breaks have been spent in the hospital.  While her friends were in Florida laying in the sun, she was laying in a hospital bed hooked up to an IV. My mother’s heart would cry “this isn’t fair” and then I would go into my “fix-it” mode.  

What do I do?  I go shopping.  For Sarah.  I buy her clothes and shoes and fun jewelry. We have even been known to do on-line shopping from her hospital room.  

On one such occasion she was frustrated with an on-line order she had been trying to place. The fact that she was receiving  large doses of pain medication magnified her emotions and I found myself on the phone at midnight with a math-challenged sales person  trying to explain how to work the discount that was  being offered  on the Banana Republic website! 

 Another fun hospital memory was Sarah and her boyfriend,  at the time, taking a “walk” with her IV pole and returning from the gift store  with a stylish pair of boots!  I had to bite my tongue (severely) so I would  not freak out about her trek around the dirty hospital floors with just her socks on.   

At the end of the day, we all know that buying “things” will not make up for the losses we experience and the emotions we feel as a result.  Shopping is just  a distraction, not a fix in her not so normal life.

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    I've got 8 scars and am missing two feet of intestines and my life isn't normal, but whose life is normal?  I want to use my experiences to help you, even if it means sharing embarrassing experiences. I am also looking to break the stigmas associated with IBD in order to make living with IBD just a little bit easier. Hope you enjoy!

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