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Proudest Momma on the block:My little advocate

As I was sitting at the computer the other day preparing for an upcoming interview I have about life with a rare bleeding disorder, Scarlett sat down beside me and started reading the questions. As she started to answer them back I felt compelled to write it down. . . . Her answers were too cute and insightful not to share and so I decided to include them on my blog.
  • A few details about your life: Your age now, where you live, what you do, hobbies, etc.  My name is Scarlett and I am 7 yrs old. My favorite animal is a zebra. My favorite color is yellow. I make my Mom happy by giving her massages with my brother. When I was in class one day we were doing math and I did really good because I did every single one in a really fast amount of time. If I had a pet kitten I would feed it and comb it and I would do the same with my other pets too.

  • My editor said you have a storage pool / platelet disorder — is that correct? What’s the name of the disorder? Please tell me a little bit about your condition. I have a Platelet Bleeding Disorder. It means that I have to watch out for my surroundings, because when I got hurt with my head one time, it was bad, so I have to be careful and look.
  • When were you diagnosed — at what age and how was it discovered? 3 years old and that was when my brother was born. My mom was the first one to get diagnosed and then they wanted to check me, because I had bruises all over and they hurt really bad and they didn’t know what was happening to my body.
  • How are you treating and managing your disorder?  I love my mouth medicine. When I get a bruise I usually know when I need to take my nose medicine or get ice before my mommy even does. . .  because I know a lot about my bleeding disorder. . . because I’M ME! My medicine might make me feel bad but only for a couple of days and the bruises go away ALOT faster. When I get bruises my little brother gets scared but me and mommy tell him it’s ok.
  • What are a few of the biggest challenges you face on a regular basis?  When I was in kindergarten and 1st grade I didn’t know that much about my bleeding disorder. And then when I got my head bump and my chin bump I realized I needed to watch out for my body more. When I was young my bleeding disorder was scary for me and my Mom. But then we learned we weren’t supposed to be scared and we would be all right. The DR told us we would have it when we were young and when we were old, forever, but that we would learn about it more and more everyday.
  • What do you consider among your biggest successes in living with a blood disorder: have you advocated for better care, found new ways to manage your condition, discovered solutions or sources of support that make living with your condition easier?  I’m proud that my Mom and me have learned a lot about our bleeding disorder and we are going to try harder to make changes to our bleeding disorder community and maybe become a bleeding disorder DR someday. I’m proudest of my mom because she has taught me everything that I need to know about me and myself.  

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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