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

To say my life has changed drastically since Scarlett and I were diagnosed with a rare Platelet Storage Pool Disorder, is an understatement. My parenting has turned into nothing I could've ever imagined and we are faced with new obstacles every day. There is a plethora of character traits that I have taken on, that help to keep my little bleeder safe. And I'm being forced to adapt new ones with every milestone she meets.  So call me paranoid , overprotective, preoccupied, unjustified, relentless, or just a crazy mom..... but this is who I've become. Some things I'm not proud of, some things I am. . But all, are a part me. . . I put my hand in front of my kids every time they go down the stairs. I have bandaids, instant ice packs and napkins EVERYWHERE I go. I have our emergency information taped to the inside of the dashboard in our cars. Scarlett isn't really encouraged to wear shorts and skirts because I don't want people to see all the bruises 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...