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...

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'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 ...

My children mean the world to me. . . . and even though they drive me absolutely crazy, I wouldn't change anything about my life with them and everything we've gone through . . . . But. . . Since I'm writing these stories to share our trials and tribulations I will hold back nothing and be honest by saying I didn't have an instant bond with my second born Walker.  (Please reference previous blog. ... I'm sorry you shouldn't have more kids  for more details on Walkers traumatic birth.) I remember waking up out of post op thinking oh my gosh, I have a son  . . . . and I haven't even held him yet.  When I did finally hold him for the first time, it just felt kind of weird . . . . I remember thinking WoW, I just almost died . . . . and now I have this baby!  I remember my husband walking in with him grinning from ear to ear with HIS new son in his arms.  I felt like Walker had already lived so much of his life and I hadn't been a part of it. I was stil...