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Friday, October 31, 2014

National EB Awareness Week

Today is the last day of  National EB Awareness Week.  Normally I do a series of daily blog posts that week; this year I did nothing.  Well, I take that back, I did tweet some articles about EB on Twitter, but that was it.  No daily Facebook posts sharing with my friends, family and co-workers the good and bad of EB; no blog posts about EB facts or statistics. 

It is not that I forgot that it was EB awareness week, I just choose not to participate this year.  I still support all things EB; however it has become harder and harder to feel like we "fit in."  I spent all week trying to figure out what we are doing wrong; why I feel so out of place.  Maybe it is because I dislike the message people are sharing about EB as a whole.  My news feeds was filled with nothing but phrases like "I hate EB" and "the worse disease you have never heard of it"  I find that phrase in particular DEEPLY offensive; I always have.  Mainly because EB is not a disease; it is a disorder or condition.  I know those phrases are used for the "shock value" to pull at people's heart string and pocketbooks.  But as someone with EB, it is offensive to me.   Why can't the show the good that can and does come from EB?  Why must we focus on the negative??  What is that saying to our own children???  And for those who say, well my kid isn't old enough to see what I post.  Well that may be true right now, but someday they will read it and how will you explain yourself to them at that point?? 

EB is hard, I get that.  I know some with EB suffer daily; I see it all over Facebook every single day.  And I have lived with it every day of my life but I still don't understand why we need to focus on the negative all the time.   Why not show what positive, productive members of society people with EB are??  Oh that is right, that doesn't make money like showing what is underneath the bandages does.  I am all for a cure but I am not sure exploiting our kids in some of the ways I have seen, is the way to achieve that.

Last night a fellow EB mom posted the following on Facebook; it was from a brochure she received when her son with born with EB earlier this year.  It was written by a fellow EB mom with a now teenage son. 

The primary goals of EB care are: protection of the skin against trauma, prevention of infection, maintaining the highest possible level of nutrition and avoiding dietary complications, minimizing deformities and contractures and sustaining a strong support system and a positive attitude. Many of the complications of EB can be lessened or even avoided with proper early intervention and care.

I highlighted two phrases that I feel are LACKING in the EB community.   There is such a resistance to feeding tubes within the EB community, that I could go on for days about that, but I won't.  I also feel that a positive attitude is greatly lacking in the EB community as well.  Sure we have bad days; but there is so much focus on what our kids CAN'T do because they have EB or what their family CAN'T do because of EB.  Why can we focus for one week on what we CAN do??   I seriously can not recall a time my kids missed out on something because of EB or we as a family has to skip an event because of EB.  We seem to be one of the few that doesn't allow EB to run our lives.  Sure we make make modifications at times because of the location, weather or event but overall we don't skip things just because of EB. 

Perhaps since I have EB I will never know what it is like to "just" be an EB parent.  Maybe I will never understand their disappointment, heartache and struggles as an EB parent.  I feel like I have the same struggles but I guess having EB makes me approach the whole situation with a different attitude.   I already know what my kids are feeling, thinking and what they need when they need it.  Perhaps that give me an advantage to being an EB parent.  But it also makes me feel like an outsider.  I know annoy people by focusing on the positives of EB; but it is just the way I am.  I know this post will piss people off and probably get some negative comments; and I am sure someone will tell me I have zero tact, but I am the kind of person who will stand up and say what what needs to be said and what everyone else is too afraid to say themselves.    

At the end of the day I still support EB and all those that endue it every day; but I will attempt to do it in the most positive way possible and encourage you to try and focus more on the positives than on the negatives.