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

Each year the Hemophilia Foundation of Northern California hosts a Crab Feed for friends and family of the bleeding disorder community. Scarlett and I attended our first HFNC Crab Feed!!! IT WAS A BLAST. Craft corner for the kids.  Upon arrival we had no idea what to expect and were pleasantly surprised to find a craft area set up for the children as soon as we walked into the door. The second room we walked in was where we checked in and where the silent auction was taking place.The silent auction area had tables lined with items to please all personalities. Baskets filled with tickets to local sporting events, massage packages, movie nights, items for kids, clothes, jewelry. . . and even vacation getaways. There was also a section set up for the kids to participate too. For a small amount of money we could purchase tickets for the kids to put in buckets in front of their own silent auction items (board games, lego sets, etc) and at the end of the night they all go...

Recently I was blessed with the opportunity to participate in a Womens Retreat in Santa Cruz, California.  The Female Factor group partnered up with the Women's Bleeding Disorders Coalition (WBDC) to co-host an evening of  food, laughter,   education and ended the evening with some gentle yoga!  Amazing group of women I headed off for the retreat early on a Friday morning. It was cold and rainy and no signs of sunshine were on the horizon, but I left my house eager for what the day had to hold and was ready for some girl time. I live about 2 hours from Santa Cruz and was picking up the president of WBDC on the way, whom was flying in from Texas for the event. . .  Selfie by the Board Walk We were both eager to get to Santa Cruz and see what was on the agenda for the day. We knew we would be meeting up with one of the co-founders of the Female Factor group whom had an amazing lunch prepared for us once we got to her house. We cau...

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....

I don't think some people in my life take the time to stop and look at what daily hardships we have to face trying to keep this family together and sometimes it just really pisses me off.  There are days I just want to quit my job. . . and just give my all to the family. But I know in my heart of hearts that not only could we never afford that, I would probably lose my mind.  Even though I would love to be a stay at home Mom, I love my job and I think I would go crazy at home with just my kids. I was home with Scarlett for 2 1/2 years and I missed being a preschool teacher. . . I get to laugh and play and watch these amazing little minds work all day. . .  but sometimes it's just so hard to give your all to 24 screaming toddlers and then be able to go home and have anything left to give. In our wildest dreams we never could've imagined the life we are living and in no means did I think we would be under so much added stress because of Scarlett's diagnosis of Platelet...

I see the way that you are looking, at these bruises that cover me. But there's so much more to the story, that you just don't see. They say that I have a bleeding disorder, and that my Momma has it too. They are always telling me, the things I cannot do. They tell me to be easy, be careful,  always watch my step. . . filling my life with NO'S and even some regret. I don't always get to play with the others, my Mom says they're being too rough. But sitting out on the sidelines, can sometimes really be tough. Written by, Kari Peepe pspdaware@gmail.com www.pspdaware.com ©KariPeepe/atouchofscarlett.blogspot.com http://atouchofscarlett.blogspot.com