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

Dear Wish Family,   The   U.S. Airforce Thunderbirds   are inviting wish kids to attend a practice flight show and meet and greet at Travis AFB in Fairfield on Friday, March 29 th .   Wish kids will watch the Thunderbirds Practice Show and meet the Thunderbirds as well as take photos with them and get their autographs.  We do not have a specific time but in the past, event has lasted approximately 2-3 hours. The venue is wheelchair accessible.   

Originally posted on HFA's Infusing Love Blog . . .  https://www.hemophiliafed.org/news-stories/2019/05/infusing-love-the-ideal-mothers-day/ Most that know me, will tell you I do everything for my kiddos. That I spoil them. That I’m always driving them to after school activities or going to the park, for walks, bike rides, etc. I rarely say no and let them try whatever sports and activities they want to do. I spend most days catering to their every need and for the most part don’t have a problem doing so. But on Mother's Day and my birthday all that changes. It's guilt free payback time. I don’t know how you do it in your house, but I REALLY hype up Mother’s Day. Weeks, sometimes months depending on the year, I start sending out subtle clues. I’m constantly reminding the kids (and my husband) of all the things the magic mom fairy somehow gets done everyday and that Mother’s Day is the day to show your appreciation and gratitude and DO some things YOURSELF. So this...

I’m pleased to say it’s been months since I’ve blogged about Scarlett having an incident. What seemed to be never ending stories of fear and questioning whether I would survive having a daughter with a bleeding disorder have now transpired into minimal blogs filled with reminders of how far we've come.  But this week we were reminded of why I started blogging in the first place....which was to share our story in hopes of getting some answers as to why our child was bleeding like they were and how to make it stop or prevent it from happening in the future.  Scarlett’s been performing for a local theatre group for the last few years and this year was cast as Princess Jasmine in Aladdin. After months of memorizing lines, practicing dance moves and perfecting her voice .... it was finally opening night. Scarlett made it through her first performance without skipping a beat. She sang beautifully, remembered all her lines and looked like she was in her glory. But I'd b...

Female Factor comes to my neck of the woods.  Female Factor Ladies

Every year I'm astonished of the support we get from friends and family willing to give up a weekend  to come and support our walk each year . . . and this year was no exception.  We had family, newbies, family friends, a couple that have joined us for every walk we've participated in, and even Scarlett's teacher. I'm forever grateful for everyone's love and support. I was so proud of the kids for tracking through with no complaints and loved catching up with everyone. We all loved taking a stroll around the beautiful Lake Merrit all while supporting a cause we hold so close to our heart. An amazing day and one I know will stand out amongst the rest. I walked away feeling all the warm and fuzzies and I know Scarlett did too.  It didn't hurt to have all those friendly faces in the audience as I ventured through my first time being co-chair for the walk either.  I took a lot of pride in the walk this year and had given up a lot of my free time to make ...

Originally posted on HFA's Infusing Love Blog . . . http://www.hemophiliafed.org/news-stories/2018/03/infusing-love-plenty-keep-busy/ When Scarlett got diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn't bet able to play most sports. As she went from toddler hood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious we were going to have to steer away from the traditional soccer, T-ball, and gymnastics. And so we started seeking out sports that weren't contact sports and other activities that would keep her busy. We started off putting her in Girl Scouts, which has proven to be a good decision. It' s a stress free environment where she can meet different kids in our town and she gets introduced to an array of different activities. They spend a lot of time gardening, doing Arts-N-Crafts and learning about taking care of themsel...

Late Sunday night fires and winds swept through Sonoma County leaving a path of devastation like California has never seen before. Homes were lost, families lost loved ones and landmarks were burnt to ruins. I live in Rohnert Park, the 1st town south of Santa Rosa and this is how my week played out. . . . The 1st image I saw  Scarlett had trouble falling to sleep that night, the winds were horrific. Trees were swaying, branches were falling on the roof and there was an eary sound to the storm outside. She finally fell asleep around 11:30pm.  I settled in to watch my Housewives show and started scrolling through FB. Around 1am a picture popped up on Facebook I'll never forget. It was an image of flames covering the hillside. And those pictures didn't stop coming. Local news started flooding Facebook stating there were several fires burning in Calistoga and Napa, which is about 25 miles East of Sonoma County. Within an hour the fire traveled West and Santa Rosa ha...

Every year children from the Hemophilia Foundation of Northern California (aged 7 and up) and other foundations are given the opportunity to attend Camp Hemotion. A camp just for those affected with a bleeding disorder. Making the choice to send Scarlett to a week long camp was an incredibly tough decision, but I'm so grateful I agreed to let her go, as I know the memories and independence she gained will last her a life time. Last year Scarlett wanted to attend but I didn't think she was ready and I know I wasn't. So we set our sights on this summer and Scarlett had been eagerly awaiting it's arrival ALL year long. I dropped her off on a Sunday. The bus picked her up in front of the Oakland Children's Hospital, which is about 2 hours away from my house. I remember the drive there that day, seemed to take forever. I think I had been in complete denial up to that point.  I had been abnormally calm and walked into the situation thinking I was going to be fine....