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

The day we told Scarlett she was going to Disney World is a day we will never forget . . . .The anticipation up to it was a little much, but it was all well worth it in the end . . .The look on her face is one that will be engrained in my brain forever . . .  her smile was bigger than I had ever seen on her before.  Leading up to the day of the party was really hard because she literally didn't know anything . . . but all the anxiety and secrets really paid off.  A couple days before the party we told Scarlett that we heard there was a party at a local park where you could dress up in Disney clothes, an idea that was totally plausible for a 5 year old.  It was so hard not to blow our cover as she asked each family member she saw prior to the party if they wanted to come to this crazy Disney party Momma was talking about. . . they of course all acted shocked and accepted as if it was a great idea. We found out Make A Wish was sending us to Disney World about 5 weeks before we kn

I went to yesterday's genetic specialist appointment hoping they would be able to give me some insight into why I have this rare bleeding disorder. . .  where I inherited it from and how my children and my children's children will be affected by this. . . I came out of the appointment with literally no new information and feeling more alone than I've ever felt since being diagnosed with Platelet Storage Pool Disorder.   Up until this point I've seen a specialist in Kaiser Santa Rosa, Kaiser San Francisco and Stanford Medical Center all in hopes of finding someone who gives a shit enough to help me find some more answers. There simply has to be people out there researching this disease if it's listed under the umbrella of Hemophiliacs, where are they and how do I get hold of them? Because there are no other cases to go off of. . . much of the decisions being made about Scarlett and I are based on how to treat a Von Willebrands patient yet scientifically/biologicall