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...

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...

I recently posted a story about the situations that were going on with Scarlett’s school and was quite surprised by the responses I’d received. I got a lot of back lash from not only family, friends, but the bleeding community too. I was told I was laying down and letting the system win. I felt very judged, misunderstood, and a lack of compassion from fellow bleeders that I thought were there to lend support, not lend their judgments.  Call me naive, not thick skinned enough, or "stupid"  but I have always looked towards bleeding disorder groups as a place where bleeders could lend positive advice and tools to help each other cope with life with a bleeding disorder.  Never in my wildest dreams did I think it would turn into a place where people bash one another for decisions they know nothing about because they haven't lived a second in the other persons shoes.  I recently went on Facebook to find that a “friend” felt it was necessary to talk about the way in whic...