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The Jackass whisperer

I recently posted a story about the situations that were going on with Scarlett’s school and was quite surprised by the responses I’d received. I got a lot of back lash from not only family, friends, but the bleeding community too.I was told I was laying down and letting the system win. I felt very judged, misunderstood, and a lack of compassion from fellow bleeders that I thought were there to lend support, not lend their judgments.  Call me naive, not thick skinned enough, or "stupid"  but I have always looked towards bleeding disorder groups as a place where bleeders could lend positive advice and tools to help each other cope with life with a bleeding disorder.  Never in my wildest dreams did I think it would turn into a place where people bash one another for decisions they know nothing about because they haven't lived a second in the other persons shoes. I recently went on Facebook to find that a “friend” felt it was necessary to talk about the way in which I’m dealing with my daughter’s bleeding disorder. . which sparked up a conversation suggesting that I’m “encouraging" Scarlett to “live” life as if she were “disabled“ and all “for secondary gain.”Let me start off by saying this comment makes me sick....Where do I begin to respond to this. . . ?????
Secondary gain? Really? What am I gaining? . . . Endless Dr. appts trying to find answers?  Being stressed all the time?  Sleepless nights? Wait. . .it must be the look on Scarlett's face as I tell her the Dr's say she can't participate in another activity. . . definitely not a secondary gain. Feeling like your in this fight alone?Maybe it's feeling sick to my stomach all the time because I worry so much about her getting hurt?. . . NO, thats not a secondary gain either? HmmmmI would like to think we all go through our fair share of hardships with our bleeding disorders and feel we should show more compassion for one another,  rather than put each other down. I guess those that are lucky enough to never go through any difficult decisions regarding themselves or a child's bleeding disorders would feel they have reason to judge. But I hope most bleeders out there don't feel like this.  Everyone of us is different and apparently some of us are struggling with this more than others.  Instead of fighting one another. . let's reach out. Be supportive in a constructive way and remember that everyones' diagnosis is different. Just because something has worked for you doesn't mean it may work for another bleeder. I DO believe sharing our stories and acknowledging the similarities and differences between us, only makes us more knowledgable of bleeding disorders as a whole. This hasn't brought me fame or fortune, this has brought me an understanding that I'm not alone.
All of these judgments left me feeling, only for a short moment, like putting myself out there wasn't helping people like I thought, but instead giving people a forum to kick people while they are down. I get to a point every now and then where I don't think I can take anymore. I'm defending our disorder so much sometimes I just don't think I have anymore fight in me left.  But then I have to stop and remember all the hardships my daughter IS going through because the Dr's DON"T have the answers. And that the reason I started sharing our story was not for secondary gain, but to find others going through what I was going through and to help find the answers about our rare platelet disorder!
I DO hope the secondary gain that comes out of this is a road paved for those in the future with a platelet disorder, my children and  grand-children having meds to help them live a more normal life and a better understanding about our disorder from others in the bleeding community.
Honestly anyone saying someone is seeking secondary gain from their child's ailment... Must not have kids of their own or is just really insensitive to what others may be going through... It saddens me that I'm raising my children in a world where people feel they need to put others down all the time instead of trying to lift them up.
Suggesting my children will suffer from being exposed and/or protected from her disorder absolutely infuriates me... Everything I'm doing is for my daughter and for future generations.. NOT BY ANY MEANS FOR SECONDARY GAIN!

Thinking people are stupid cause they don't share your views, only makes you sound like an insensitive jackass!


Written by,
Kari Peepe


 ©KariPeepe/atouchofscarlett.blogspot.com
http://atouchofscarlett.blogspot.com
For more stories on my journey with defending our disorder and becoming our own advocates please check out:
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