A Touch of Scarlett, our journey with a rare bleeding disorder

It's official. . . We got the call saying that Scarlett's Make a Wish to go to Disneyworld got granted and we will be staying at the GIVE KIDS THE WORLD VILLAGE .  We are flying out on Friday March 28 and will be returning the following Thursday.  Upon looking at their website I was brought to tears reading about all the amazing adventures that are in store for the family when we are in Orlando.  Scarlett's reminded of her bleeding disorder daily and is always feeling like it's affecting her life . . I hope this magical vacation gives her a time where she can just be a kid and not have to worry about anything else. We are so excited but are going to try and keep it a secret from Scarlett until her Wish Reveal party in a few weeks. . . If you would like to see where we will be staying and read more about this amazing destination just for children with life threatening diseases . . Please visit Written by, Kari Peepe ©KariPeepe/atouchofscarlett.blogspot.co

Since Scarletts diagnosis of the rare Platelet Storage Pool Disorder. . . I've definitely felt like I had to defend our disorder .  There's often the misconception that I'm over reacting and making a bigger deal out of our bleeding disorder than necessary.  Sometimes I feel like people don't understand I'm fighting for her life each day. . . Each and every moment I spend with her I'm trying to prevent her from getting an injury . . . On most days this leaves me feeling emotionally and physically exhausted and I feel like a lot of people will never understand the daily rituals that we've had to take to keep Scarlett safe.  They don't understand that all though Platelet Storage Pool Disorder may not be considered terminal . . . IT IS CONSIDERED LIFE THREATENING. I've had a few people say to me things like "I didn't know her situation was so serious. . . I mean is it considered terminal?" and my response to that, is this . . . all tho

So as I've mentioned before raising siblings when one of them has a bleeding disorder is a daunting task . . . every time they play rough with one another or energy levels run too high, my husband and my worry meter goes through the roof and we are usually forced to separate them.  Being that Scarlett is the oldest, she usually gets sent to her room . . . . no matter who was at fault. I'm a preschool teacher so I take pride in the fact that I usually can start to see a situation going from bad to worse early enough to alleviate any possibilities of one of the kids getting hurt. . . LAST NIGHT< THAT WAS NOT THE CASE.  What started off as hearing belly ache laughing from the two of them in the back of the house, quickly turned to a blood curdling scream from my daughter that left me sprinting down the hall as fast as I could get to her . . .There I found a bite on Scarlett worse then I've never seen in the 17 years I've been working with toddlers.  Granted I know tha

I wouldn't say that I'm a religious person or that I was raised with GOD or The LORD instilled into my brain.   But I do believe we were all put on this Earth for a reason. . . that we all have a calling, something that makes us different than everyone else and that can give us the power to change the lives of others in a positive way!  I believe now. . . that my daughter and I were diagnosed with this rare bleeding disorder for a reason, and I think it was so our story could be heard and we could reach out to others and start making a difference.  Our history and personal truths all tell a story and hopefully sharing ours will change the lives of others. Now. . . . as I mentioned before I've never been super religious, following a certain religion that is. . . I attended numerous church services of countless different religious back grounds and none of them really struck with my inner core beliefs.  I've always found it odd to have thousands of different kinds of peo

Finding creative ways to keep my daughter (who has a bleeding disorder) safe while providing enough stimulation for my son whom is a toddler can be frustrating at times . . .  but Family Fun Days have become an amazing way for the family to get together and enjoy each others company, while trying to forget about all the craziness. Our Family Fun Days vary from week to week depending on the weather, schedules, money and so forth but each week I try to plan something . . . whether it be a cooking project, an art project, cozying up in the bed and watching a kids movie, visiting a local hot spot, or even a special lunch followed by a trip to the park . . . just something out of the ordinary that we do with the kids and give them our undivided attention. Summer Time and the Fall are obviously our more active months out doors.  We typically try and do something "special" and outside once a week, during these months and take advantage of everything our local counties have to o

I'm always questioning whether the ways I'm dealing with Scarlett's bleeding disorder are going to end up scarring her for life.  It's very hard for me to know when it's ok to baby her and when I need to teach her more tough love.  A lot of the time I feel like we just spoil her and give her everything she wants cause we feel like we have to say No and restrict her from so many other aspects of her life. . . I'll never forget the day that Scarlett was talking about all the toys she has.  She ended the conversation by telling me that she "must have so many toys because I love her Soooooo much,"  I  responded by telling her that of course I loved her and that she had so many presents because everyone spoils her so much.  She thought about that for a minute and responded with "that's because of my bleeding disorder."  This response left me feeling a mix of different emotions- Why would she think she only gets thing because of her disorder