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

An interview I did with HFA. . . http://hemophiliafed.org/dateline/HFA_Dateline_2015_Q2_Summer/#p=26 For more stories on my journey with defending our disorder and becoming our own advocates please check out: The Jackass Whisperer, Dealing with other people's judgements:  http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html Help wanted!Seeking Dr who give a shit:  http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html Defending our Disorder:  http://atouchofscarlett.blogspot.com/2014/02/defending-our-disorder.html I am PSPD:  http://atouchofscarlett.blogspot.com/2015/04/i-am-pspd.html Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html Fear of the Unkown:  http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html

A piece I wrote for  HFA 's Infusing Love . Originally posted on August 19, 2015 http://www.hemophiliafed.org/news-stories/2015/08/infusing-love-her-own-protector/ Infusing Love: Her Own Protector Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love August 19, 2015 The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I imagined. Throughout her preschool years, we were faced with countless trips to the doctor and emergency room over injuries that I eventually learned I could not prevent. Proof that Scarlett bruised immensely and the doctor’s constant fears of head injuries had me feeling like I was going to have to keep my daughter in a bubble for eternit...

A piece I wrote for  HFA 's Infusing Love . Originally posted on May 20, 2015 http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/ Infusing Love: Physical Fundraising Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love May 20, 2015 This is becoming one of my favorite times of the year to be a bleeding disorders advocate.  It’s the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country. In 2011, HFA hosted it’s first annual  Gears for Good Bike ride  from West Virginia to DC, to help raise awareness about bleeding disorders, all while raising funds for HFA’s financial assistance program,  Helping Hands.  Each year, more and more individuals have been joining in the fight to raise money for this important cause. And in 2014 HFA succ...

A piece I wrote for HFA 's Infusing Love . Originally wrote on February 18, 2015 http://www.hemophiliafed.org/news-stories/2015/02/infusing-love-an-unexpected-haven/ Infusing Love: An Unexpected Haven Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love February 18, 2015 I’d be lying if I said my nerves weren't through the roof upon entering the gates to the Taylor Family Foundation’s Camp Arroyo. To say that going to a family camp took me out of my element would be an understatement. I had no idea what I was getting myself into or what to expect. However, I was surprised. What I found was a group of people that made us feel welcomed, safe, loved, and most importantly heard. We were originally approached about going to a camp for hemophiliacs, at Hemophilia Foundation of Northern California’s holiday party. Upon hearing the suggestion, my first reaction was to say no. I have social anxiety and don'...

Originally posted on October 15, 2014 on HFA 's website  http://www.hemophiliafed.org/news-stories/2014/10/infusing-love-taking-care-of-the-patient-the-caregiver/ Infusing Love: Taking Care of the Patient & the Caregiver Categories:  Adult Women ,  Families ,  HFA News ,  Mom's Blog: Infusing Love October 15, 2014 I don’t think I’ll ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with   Platelet Storage Pool Disorder (PSPD) . It was 10:30 AM on a Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that look on her face–you know the one — I’m so sorry! It was Scarlett’s school. I knew she must be hurt. I immediately stopped what I was doing and reluctantly took the phone, frightened of what I was going to hear on the other end. It was the principal. “Kari? Scarlett hit her head. She ran into a pole in the hallway.” She went o...

Last week I was reminded of the fact, that simple things like date nights, couples trips and even Halloween parties at the local gym, usually involve a lot of planning . . . followed by a lot of worries. My husband and I went out to dinner the other night, and once we got to the restaurant, we realized neither of us had our cell phones with us. This sent my husband and I into a state of panic that I'm sure most parents don't endure.  We quickly asked to use a local land line to let my mother-in-law know which restaurant we were eating at, so she could call us if there was an emergency. What would ordinarily be a fun/spontaneous time away from the kids, quickly turned into a reminder of how we are NOT ordinary parents. We don't get to drop our kids off with a babysitter and not have a worry or care in the world.  Instead we are constantly on edge, praying something doesn't happen when we are gone, and always checking our phones to make sure the sitter hasn't calle...

As if going to the ER with Scarlett on Thursday and having to get a CT wasn't enough .....last night Scarlett gave us ANOTHER scare! As I was getting Scarlett ready for bed, she suddenly went very pale and asked if she could close her eyes while I was reading to her... Then she complained her stomach hurt. I asked her if she felt sick or if she had to go to the bathroom and she ran out of the room before she could answer. Seconds after sitting down on the toilet Scarlett threw up red and what looked to me like several golf size blood clots. It looked like something out of a horror movie. Our bathroom throw rug was covered and it was all over my poor little girl too. No Mother should have to see their child go through this and I can't imagine what was going through her little 6 year old head.  I tried to remain calm, cleaned her up a little and told her I needed to call her hematologist. I hollered for my husband and the look on his face as he entered the bathroom affirmed I w...

Sex. . . . a subject that intrigues all of us, most of us are doing, yet one that's still considered too taboo to talk about. As my husband and I were intimate the other night I was reminded of yet another part of my husbands' personality, I will forever be grateful for. There are parts of this bleeding disorder that bring about some embarrassing issues during the most unpredictable times. . . like when we're having sex and I appreciate having a partner who's so understanding. When my husband and I were first dating and at our young and in love stage of life. . . intimacy was an issue.  When we first got together I hadn't been diagnosed with Platelet Storage Pool Disorder yet, but it was obvious to us, certain positions enhanced my chances of bleeding, a lot more than others.  The first few years we were together, we had to go through many trials and tribulations before figuring out, through open communication and a good sense of humor, which positions caused mor...

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...