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

As we approach our third year anniversary to Scarletts Make-A-Wish trip it became abundantly clear that the experience has left Scarlett with unforgettable memories and ones she'll apparently never want to forget. As my husband and I were running around preparing for a recent storm, Scarlett came out holding her Make-A-Wish bag which is filled with all her memorabilia from that indescribable trip. She then proceeded to tell me that if we were going to flood and be leaving the house, all she wanted was her MAW backpack. Northern California has been hit hard this year with storms, landslides and a lot of flooding.  Being that our house is right in the middle of a flood zone leaves us with the fear of flooding every time a bad storm comes through. And this year is no exception.  In fact, we've had the worst floods that I can remember since moving into our house. Three times this year already, we literally couldn't drive out of our house because our street had turned into...

An article I did for Hemophilia Federation of America's Dateline that talks about the HFNC's women retreat that we went to. Originally published in HFA's Dateline 2016/Fall issue http://hemophiliafed.org/dateline/HFA_Dateline_2016_Q3_Fall/#p=24 Diet and nutrition has always been a huge part of my life. But it wasn’t until becoming severely anemic after the delivery of both my children did I really start paying attention to the balance of certain vitamins and nutrients in my daily diet. Fast forward a few years later to my daughter whom has a platelet storage pool disorder becoming a self pro-claimed vegetarian and I was quickly learning how to integrate the correct iron, proteins and vitamins into her diet that were necessary to keep her growing at the healthy rate of her peers. This has proved to be more than difficult and something I’m always researching and hoping to learn more about.  So through all this a vision was born . . . and a mini-Girls G...

Originally posted on HFA's Infusing Love Blog  http://www.hemophiliafed.org/news-stories/2016/08/infusing-love-thank-you-to-our-teachers/ Through out the school year I have such a hard time balancing being a Mom that every teacher or administrator loves to communicate with VS. The mom that everyone wants to run from when they see coming. So I decided to sit down and write just exactly what I wish I could say to every teacher/administrator Scarlett comes across.  To whom it may concern,    Hello! I am the lucky mother of one of your new students. . . Scarlett. I thought I should introduce myself and tell you how special of a girl you have entering your class. She is charismatic, funny, thoughtful, kind and always ready to help a friend. Her smile is infectious and she holds a special place in a lot of peoples hearts.  But as you also know she has a bleeding disorder which comes with it's fair share of drama....

Scarlett is in a year round school which leads to a quick summer. Before we know it, summer has come to an end and it's time to get ready for school. I remember this being an exciting time. . . A new class, new teachers, new classmates, new responsibilities . . It was a much anticipated time of year. . . But for my daughter I fear this isn't the case. For someone like my daughter changes can be emotional, difficult and downright frightening. So on an ordinary sultry California night in July, while most kids were settling down and anticipating another day of summer fun . . . my little princess was crying in her bed, riddled with anxiety about starting the 3rd grade. When I went to console her and ask her what was wrong she broke down explaining the fears she had. Through a few minutes of sobbing incoherently, screaming things like" I hate my bleeding disorder" and " I wish I could make it go away.". . . and I got her to calm down and process what was bothe...

I was recently given the opportunity to attend an event where we spoke about intimacy issues amongst some females from the bleeding disorder community. Subjects most don't feel comfortable sharing or may feel embarrassed to talk about, were thrown out for discussion and I was amazed to hear how honest and candid the females were willing to be. We enjoyed a nice lunch in the city while discussing roadblocks we may have found along the way where intimacy is concerned and it was all followed by a scavenger hunt around San Francisco. Yet another fun filed day with my Female Factory crew.

Food, diet, weight. . It’s always played a major role in my life. My adolescence and teen age years were consumed with a viscous cycle of unhealthy eating, which led to weight gain, then soon followed by whichever unrealistic diet was trending at the time. By the time I reached my adulthood I was bordering on an eating disorder and had formed a very unhealthy relationship with food.  Fast forward to being a parent and not much has changed. I still don't have the healthiest relationship with food and I constantly worry about my weight. . . except now I have my children’s eating habits to worry about and our bleeding disorder to consider.  Scarlett decided at the age of 2 that she would be a vegetarian. This can pose quite a problem when we feel like we are bordering on anemia all the time as it is.  And so I began my journey on eating a high iron diet. I started researching anemia and recipes that could help me introduce this important element into our daily di...

Keeping Scarlett safe at school is always on my mind and I've always tried to eliminate as much stress as I can on her teachers when it comes to things like field trips, jog-a-thons, and field days. Because of this I've had the privilege of joining Scarlett on every field trip she has gone on. (Well maybe her Daddy took her to one) We've seen several performances, played in pumpkin patches, visited wildlife preserves, but this years took the cake. What was described by Scarlett as "the best field trip EVER",  turned into a  learning experience for me as well. I was reminded time and time again as we hiked 3 hours through a fairly skinny tretorous trail that Scarlett really has learned how to navigate through hiking, climbing, etc in a safe manner, making cautious decisions but still feeling like she has the freedom to explore at her own will. As her peers kept tripping and even falling in the stream...She cautiously proceeded, carefully checking her surround...