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Tuesday, June 28, 2011

Why I don't hate EB...

Warning.....if you are the parent of an EB child and/or a person gets offended easily, you may not want to read this post.  I intend no disrespect to anyone, this is just the way I feel.

Sunday night before I went to bed I knew that one EB baby (baby A)  had gotten their wings.  I remember thinking this was the first EB death this year of a baby also born this year (that I was aware of) and sadly, I wondered who is next.  For some reason EB Angels always go in pairs (and sometimes 3 at a time).  Little did I know that when I woke up the next morning not only would I learn of one, but two more deaths:(  Baby L got his wings Friday and baby M got his wings Monday morning.  Three at once is hard to deal with as a community.  There were a lot expressions of 'I hate EB' going around Monday.  And as crazy as it sounds, and all that I have been through, I don't hate EB.  I may dislike it at times, it makes me cry a lot, it may cause a lot of stress in my life, on my marriage and among my family, but I don't hate it.  It is a part of who I am; has been since the day I was born.  It has made me the person I am today, allowed me to do the work I do, helping other EB families.  I have met so many WONDERFUL people BECAUSE of EB.   Sure there is a lot of sadness that comes along with EB; about 1/3 of all EB babies born each year don't make it till their first birthday, I know that sad fact all to well.  

I try not to take it personally when people say they hate EB; I am not EB, it is just a part of who I am; just like that fact I have brown hair and brown eyes.   But it still bothers me when I hear that phrase.  I know how hard it is to care for a child with EB and I know how devastating it is to lose a child to EB.  But I also know what it is like to HAVE EB and remember what it was like being a child with EB and hearing people say they hate what you have.... it really does a number on ones metal health.

People tell me not to take it personally or not to get to close or maybe that its time for me to back off for a while...but how can I?  How could anyone?  I can't walk away from these families especially these three families.   They need all the support they can get at a time like this.  I don't expect anyone to see things they way I see them; nor change their way they think or they things they say; but please don't tell me to change the way I feel either.....

Here are the three main reasons I don't hate EB...because without EB, they never would have come into our lives.

1 comment:

  1. I think you said it very well Sara. Thanks for having the courage to write about it. Even though I don't know what it is like to have EB, I have never been comfortable seeing or uttering those words either. Bella was not her EB but as you said, a lot of wonderful things have come into our lives because of it. I do not wish the pain and suffering that these kids go through on anyone. And hearing of these 3 deaths in the last few days is beyond sad. I guess "hate" is just not something I feel in my heart.....that's that best way I can say it. EB is not an entity that understands hate or love. As you said, it is a part of some people just as their hair or eye color. I surely do not like EB, but I can't bring myself to say I hate it either.