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

To say that Scarlett's Make-A-Wish trip to Give Kids the World made a lasting impression is an understatement. It has been almost 6 months since our amazing trip to Our Happy Place and I can honestly say, it is something that is still talked about in some capacity several times a week. Whether it's my 2 year old talking about riding on the carousel or Scarlett reminiscing about yet another favorite part of her trip. . . Our Wish trip has made an impact on us that will forever stay in our hearts. This week one of Scarlett's bleeder buddies is venturing out into the same experience. An indescribable week filled with magical memories that only Give Kids the World can provide. As soon as I told Scarlett that her pen pal was going to Disney World this week, she asked if she could go to the GKTW website. She wanted to watch all the videos and find the story I had written about our unforgettable experience. She then proceeded to write these. . A list of some things that her...

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...

Scarlett started 1st grade this week. An exciting time for her. . . but terrifying for me. This year boasts a lot of responsibility for Scarlett and I pray we've given her the tools to gain her independence, while still making safe decisions. Last year with being confined to only the small Kindergarten yard, Scarlett was pulled from the play structure after hitting her head several times. Both her Dr.'s and the school staff felt like in order for to be as safe as possible this year, she should not be allowed on the playground. We all agreed until we feel like she has better control of her body and becomes more coordinated. . . that living on the cautious side of life, is our best option. After several meetings with her elementary school including past teachers, nurses, the principal, school psychologist, and her current teacher. . we came up with a schedule that will keep Scarlett as safe as possible without exposing her to all the harsh play out on the playground. This year...

Walking in the door from work the other day, I found Scarlett hauled up on the couch, sucking on a piece of ice.  With a frightened look on her face and a bloody paper towel in her hand she proceeds to tell me that "it's been bleeding since she ate chips."  After listening to her story and examining her mouth we found out Scarlett had her first loose tooth.  An exciting milestone for most children.  But one we were dreading for fear of the unknown.  Mouth bleeds are one of the biggest issues with people with Platelet Storage Pool Disorder and we were uncertain how losing her baby teeth was going to go. Because of the rarity of our disorder we didn't know if the meds would work and how much blood we should expect.  When I was a child, I remember some instances where there was a large amount of bleeding after a loose tooth, and we tend to use my history as a resource on what to expect with Scarlett.  But after comparing stories with my Mom, we think al...

My biggest fear (and something I've seen countless times, being a preschool teacher for 15 years) is children bumping their heads.  Bumping them into each other. Bumping them on the floor. Bumping them on a stair. On a slide. On a swing. . . Everything! And this is what I'm supposed to be trying to prevent my child from doing?  Not an easy job to take on AND one I'm tired of defending.  Because Scarlett's condition is so rare, Dr.'s don't know for sure that the medicine she's been prescribed is actually going to work in a life threatening situation. . . So there advice is to be preventative. Try to do everything in your power to lessen the chances of her getting hurt.  An impossible task to take on, BUT one I'm being asked to do. Scarlett iceskating  The question of Birthday Parties, Play Dates, and Sleepovers started for Scarlett, when she was about 3 years old. The preschool I taught at and that she attended, left us with many invitations to all ...

I'm ending Scarlett's first year in Elementary school feeling a little depressed and defeated by her bleeding disorder.  When she started Kindergarten we were very reluctant to label her as special needs and didn't want her bleeding disorder to affect her school, in any way.  I knew the federal laws that were put into place: the Individuals with Disabilities Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 were there to help us and protect her rights for a proper education, but I still felt uncomfortable with labeling her as special needs. . . for fears it would be producing some sort of a stigma.   And we surely didn't want to have to restrict her from playing with others. . . fast forward to the end of the year and she's been pulled from climbing and finds herself already having to play by herself because the other kids play to rough. Last week we had a meeting to go over her 504 plan for next year and the school is suggesting she doesn't get to ...

It's been two months since our Make-A-Wish trip and it's safe to say that our family still talks about all the fun we had and that it has made a lasting impression on all of us.  My daughter's room is filled with posters overflowing with pictures from her trip to Florida and her Wish Reveal party and memorabilia covers every surface of her room.  She will pack up her bag of pictures, brochures, stuffed animals, her trophy from Village Idol, and give a presentation about her trip to anyone who will listen. . .with her two year old brother chiming in whenever he can with statements like "Walker ride da chicken, on na carousal at da The Village." or "I saw a Mickey, at The Village." It's safe to say Make-A-Wish and Give Kids the World will remain in our hearts forever and thoughts from our trip still consume our minds. . . As my daughter and I were driving home from school the other day. . . She asked ... "Momma, when I grow up and have a daug...

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

As Scarlett's Kindergarten year comes to a close . . . we are being forced to re-evaluate everything that has happened over the last year involving Scarlett's safety and are proven to be at the mercy of her bleeding disorder once again. . . Over the course of her first year in Elementary school (and being away from family breathing down her neck) she hit her head 3x within the first 3 months of school and her Dad and I decided to pull her from any climbing in the Kindergarten yard.  She's gone through the most of her first year in Elementary School not being able to play like the other children, only able to use the play structure for the monkey bars and the slide. Several different situations through out the year have slowly led us up to the point where we are at today, but when she came home last week with a huge bruise on her chin, (that had a scab, so it had to have bled at school) . . . and nobody, not even Scarlett had an explanation as to how it got there. . .  we ...