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

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...

While talking to other bleeding disorder parents online one day, one of them mentioned that she had known someone with hemophilia that had her child's wish granted through the amazing Make a Wish Foundation.  After asking relatives and friends their opinions of whether or not this was something I should look into. . . I decided there was no harm in just filling out the form on line and to be honest with the on going controversy over whether bleeding disorders are life threatening left me feeling pretty skeptical.  Within 2 weeks, the Make a Wish Greater Bay Area office got hold of me to have a phone interview.  During this interview I gave them a lot of contact info about my husband and I as well as some info about Scarlett's bleeding disorder.  They told me the next step would be getting hold of her hematologist and getting approved that Scarlett has a life threatening illness.  After I heard from them to he honest I didn't think we would hear back from them....

When I turned 35 something clicked in me that I haven't been able to really put into words, but I'm going to try.  A lot has happened to me in the last 5 years that has forever changed my life and left me feeling . . . well, a little depressed.   It almost doesn't seem real and feels more like a script out of a Hollywood drama than really the story of my life . . .  I lost a Grandma, an Aunt and an Uncle. My family rescued my sister from a psychotic now ex-husband (that she has a restraining order against). I recovered from the two horrifying deliveries of my children. My daughter and I were both diagnosed with the rare bleeding disorder Platelet Storage Pool Disorder. I suffered a miscarriage.  I've watched my brother get deployed twice and I've severed relationships with family over unexplainable allegations. And last Spring, I lost my father -in-law abruptly to a heart attack, a complete blow to the whole family.  All of these situations left me fe...

So yesterday at work one of the preschoolers head butted me causing an enormous nose bleed that lasted 45 minutes. . . . 15 of which were after I took my medicine to help with the clotting.  I tried to get hold of my hematologist, but was unable to reach anyone which left me feeling frustrated and scared if this were to be a more serious situation than a nose bleed.  I've taken the stimate spray only once before since being diagnosed with Platelet Storage Pool Disorder and the side effects were horrible- nauseated, fatigued, dizzy, headache, and an amazing feel of dehydration that couldn't be helped because I had to cut my liquid intake in half for 24 hours after taking the meds!! I always feel bad when I have to give Scarlett her nose spray and now that feeling is enhanced even more. I often find myself so worried about keeping Scarlett safe and forget I have to worry about myself! This was a great reminder for me to remember I've got a life threatening bleeding condition...

     Getting Scarlett into the elementary school we wanted felt more like we were trying to get her into college rather than getting her into Kindergarten.   And for any parents going through this process I encourage you to stay strong and stick to what you believe is the best for your child.  I,  like most parents new I needed to research Scarletts options when in came to the "perfect school" for her.  A lot of concerns came into play when making our initial decision and her bleeding disorder was top on the list.     We knew we wanted a school... - that was small - had a  safe playground  - that challenged her, while providing safe boundaries - that was close to either my husband or I (preferably both) in case of a medical emergency ...... AND - that was supportive in our decision makings where Scarlett's safety was concerned     We knew we had to try and  get her into schools in our neighboring ...

I'd be lying if I said that we are the only ones affected by Scarlett and my bleeding disorder.  It takes an aray of family members, friends, doctors and educators to keep us safe and guide us in making appropriate decisions for me, my daughter and my family. We are luckily blessed enough to have countless family members to help us not only emotionally but physically, and I couldn't imagine going through this without them. . . .    My Moms and sister are my biggest support system after my husband.  Their constant love and support has gotten me through times I had lost all hope. They are answering my phone calls at all hours of the day and night and always lending supportive words of advice and encouragement with every single call.  My sister also lends that support, but is more who I go to when I need a good laugh.  And then there's m y sister-in-law. She lives the closest year round and is our emergency back up, she's a huge part of our life and ta...

Today I was reminded of how fragile Scarlett really is and how my husband and I need to always be prepared with what steps to go through when she has an incident and what we should always have with us, if she does. What started off as a beautiful day at the park quickly escalated into a screaming child, a panicked mother and a whirlwind exit. . . . leaving onlookers wondering what the hell could've just happened. We were playing at the park with some friends of ours (who thankfully are aware of my daughters bleeding disorder), and everything seemed to be going as it should.  We had been playing for about 10 minutes, already with the usual reminders of being safe and going slow.  To anyone just watching, Scarlett came down the twisty slide like any other child would.  I was standing across the playground from her about 20 yards away when I saw her come down, bumping her chin ever so lightly on the edge of the slide as she came around a corner. . . The look however on her...