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

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...

Each year the anxiety leading up to Scarlett's 504 and IEP plan seems to take over, but this year it was different.  I finally feel like the school understands the situation and is doing everything in their power to keep her safe while providing a social environment she can thrive in. This year Scarlett showed interest in coming to the meeting because she wanted to take part in deciding her restrictions. The look of astonishment on the nurses face as she described her "platelet bleeding disorder" and explained the steps and protocol to take when she gets injured was one I'll never forger. My heart filled with pride the more I heard her go on about her disorder-she was obviously a well educated little girl. Due to some minor head bumps Kindergarten year, followed by her enormous bump in the beginning of last year . . . left Scarlett's 1st grade of school with a lot of restrictions. She wasn't allowed on the playground unaccompanied by me (which I only coul...