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 ...

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 ...

Since Scarletts diagnosis of the rare Platelet Storage Pool Disorder. . . I've definitely felt like I had to defend our disorder .  There's often the misconception that I'm over reacting and making a bigger deal out of our bleeding disorder than necessary.  Sometimes I feel like people don't understand I'm fighting for her life each day. . . Each and every moment I spend with her I'm trying to prevent her from getting an injury . . . On most days this leaves me feeling emotionally and physically exhausted and I feel like a lot of people will never understand the daily rituals that we've had to take to keep Scarlett safe.  They don't understand that all though Platelet Storage Pool Disorder may not be considered terminal . . . IT IS CONSIDERED LIFE THREATENING. I've had a few people say to me things like "I didn't know her situation was so serious. . . I mean is it considered terminal?" and my response to that, is this . . . all tho...