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

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...

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 ...

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 ...

As I sit down to write this I am again riddled with guilt . . . As I walked in the door this evening after a long day I was met at the door with a crying Scarlett sitting on the couch.  She had just bumped her chin on the stool and already had a familiar bump forming on her lower chin.  As soon as she saw me, she got that look in her eyes. . That look that screamed please don't give me my nose spray/medicine.   I calmly walked over assuring her that I would let her put ice on it for a few minutes first to see what happened. . . Within a few minutes the bruise was getting bigger and darker and starting to swell.  I looked at my husband and looked at my daughter and just wanted to break down.  I HATE THAT IT'S MY CALL. . that I have to be the bad guy, the one that has to convince her its worth it (half the time not even feeling secure with the fact that I'm giving it to her myself).  My husband never feels confident with making the final call and has always ...

I know that I am different, that has left me feeling alone. The cure for my ailment, is still somewhat . . . unknown. I hate when I have to take my nose spray. It definitely ruins my day. The side effects are horrible, I don't care what anyone may say. They say that it's supposed to help me, but it make me feel dizzy and weak. And then I still have to walk around  with a bruise on the side of my cheek. I have nightmares still of the needle, I can still feel the prick in my arm. And my Momma whispering to me gently, "they don't mean to cause you harm." I see sometimes that it upsets her,  she cries and I think I know why. Momma's afraid I'll get hurt  and maybe even die. But I will not let this defeat me,  I get braver every day!  And pray that cures and answers  will soon come our way! Written by, Kari Peepe pspdaware@gmail.com www.pspdaware.com ©KariPeepe/atouchofscarlett.blogspot.com http://atouchofscar...