Skip to main content

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:

Comments

Popular posts from this blog

PSPD 101- What is Platelet Storage Pool Disorder

Hello, My name is Kari Peepe and in 2011 my daughter and I were diagnosed with a platelet storage pool disorder. After several years of researching and going online to find men sharing their stories about hemophilia, but never women talking about platelet disorders. . . I decided to start my own personal blog, A touch of Scarlett. This has become a place where I share stories about our life with a rare bleeding disorder, spread awareness and hopefully empower others to help me in the fight for a better treatment plan.  1- What is PSPD? PSPD is as autosomal inherited disorder (like Cystic Fibrosis) PSPD is a rare autosomal inherited bleeding disorder. Unlike hemophilia which is an x linked recessive bleeding disorder. Platelet disorders fall into 2 categories Qualitative (abnormal function and/or structure of the platelet) vs. Quantitative (from having too few or too many).We fall under the qualitative category. Platelets are small parts of the blood cells that hel...

2020, you suck! Her introduction into womanhood wasn't supposed to look like this......

2020, what a year. It seems appropriate that Halloween weekend during the pandemic would end up being when my little girl become a woman.  Friday October 30, 2020 It started at 12:35 pm on a Friday. Halloween was the next day and my son's school was having a safe-distance trick-or-treating event that we'd been anxiously awaiting to attend. This would be the first time either of my kids were getting invited to come onto one of their campus' since the school year started. So, we were dressed in our Halloween outfits and ready for a fun filled day.  Keeping on her brave face as we rush out the door. We were rushing out the door, late as usual. Since the pandemic... we've definitely taken advantage of having a minimal schedule and being on time hasn't become our strong suit. Scarlett came running up to me whispering “ Mommy Mommy, when I wiped there was blood. ” I scurried her back to the bathroom to the assess the situation and assured her she’d be oK. " This was ...

Give Kids the World Village. . .Go to your happy place-Scarlet's Make-A-Wish PART 5

When people say . . . "To go to your happy place". . .  I now have somewhere to go.   My name is Kari Peepe and I am the lucky parent of Miss Scarlett Peepe. . . We just got back from Give Kids the World in Florida and we are literally beaming and my jaw hurts from smiling so much from watching my daughter in a state of such pure joy for one whole week.   I want to cherish the feeling we had when we returned from Scarlett's Make-A-Wish trip . . .forever!  Scarlett was diagnosed when she was 3 years old with Platelet Storage Pool Disorder- a rare bleeding disorder which has left her with a life time of blood work, medications, restrictions and fears of life threatening situations.   As soon as Scarlett found out about Make-A-Wish, she was ecstatic but nothing could’ve prepared her or us for the experience that was about to take place and the joy it would leave in our hearts and our minds forever.   Prior to meeting Scarlett's Make-A-Wish team I had ne...