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

I started my blog almost 1 year ago and I would be lying if I say it hasn't changed my life.  The amount of people I've connected with and been able to share my stories with has given me a sense of belonging and purpose for the first time ever. I take pride in saying that I've opened the eyes of thousands of people to the rarely diagnosed Platelet Storage Pool Disorder and I know sharing our story is making a difference. I'm so thrilled to announce that I now have a new forum to help raise awareness of PSPD and the daily worries and lessons that comes a long with it.  I'm one of the new proud bloggers for  Infusing Love on the Hemophilia Federation of America web site - A blog dedicated to moms of children with bleeding disorders. In my first blog I speak about our initial diagnosis and the  Fear of the Unknown .  Please check it out and share it with others and take your part in helping spread awareness. Written by, Kari Peepe pspdaware@gmail....

As if going to the ER with Scarlett on Thursday and having to get a CT wasn't enough .....last night Scarlett gave us ANOTHER scare! As I was getting Scarlett ready for bed, she suddenly went very pale and asked if she could close her eyes while I was reading to her... Then she complained her stomach hurt. I asked her if she felt sick or if she had to go to the bathroom and she ran out of the room before she could answer. Seconds after sitting down on the toilet Scarlett threw up red and what looked to me like several golf size blood clots. It looked like something out of a horror movie. Our bathroom throw rug was covered and it was all over my poor little girl too. No Mother should have to see their child go through this and I can't imagine what was going through her little 6 year old head.  I tried to remain calm, cleaned her up a little and told her I needed to call her hematologist. I hollered for my husband and the look on his face as he entered the bathroom affirmed I w...

Yesterday as I was sitting down at circle time with the preschoolers, my worst nightmare came true.  The moment my colleague started walking over to me with the phone in her hand I knew it was Scarlett's school. My mind went into overdrive. On the other end of the line I heard Scarlett's principal telling me Scarlett was on her way to the office, she hit her head. The aide was bringing her with a quarter size hematoma that started forming immediately and they would call me again once she got to the office. Somehow while she was walking around with her aide in the quad at recess, she managed to turn around and hit her head on a pole. By the time the principal called me back I was in my car and heading to her school. I told her to calm her down and keep ice on her until I got there. Flying down the road to the neighboring town where Scarlett goes to school, felt like it took forever.  I was trying to convince myself this wasn't going to be a bad one and that the they were ...

I think I reached my breaking point this weekend. What was supposed to be a calm, peaceful trip to the redwoods ended with my daughter and I in tears and me realizing there needs to be some big changes in our household. My sweet, caring, intelligent daughter has turned into a master manipulator. Debating, crying or freaking out every time someone follows through on a consequence she has been threatened with. Because of the waterworks she usually puts on and because I feel so bad that I'm always telling her No because of her bleeding disorder, on usual circumstances, I must admit, we usually give in. . .Yesterday this was not the case. I guess I should start from the beginning. Scarlett was up at her grandparents cabin for what was supposed to be a double sleepover. My husband, son and I joined her on the second afternoon and had taken the kids down to the playground and to explore their favorite giant redwood tree stumps. After feeling like I had been yelling at Scarlett all...

Sex. . . . a subject that intrigues all of us, most of us are doing, yet one that's still considered too taboo to talk about. As my husband and I were intimate the other night I was reminded of yet another part of my husbands' personality, I will forever be grateful for. There are parts of this bleeding disorder that bring about some embarrassing issues during the most unpredictable times. . . like when we're having sex and I appreciate having a partner who's so understanding. When my husband and I were first dating and at our young and in love stage of life. . . intimacy was an issue.  When we first got together I hadn't been diagnosed with Platelet Storage Pool Disorder yet, but it was obvious to us, certain positions enhanced my chances of bleeding, a lot more than others.  The first few years we were together, we had to go through many trials and tribulations before figuring out, through open communication and a good sense of humor, which positions caused mor...