Monday, April 6, 2015

Day 6: #HAWMC: My Hero

Today I am to share with you who my hero is...I don't have one; I have many. However, there is a certain group that I look to in the hemophilia community that I like to bounce ideas off, ask advice and look to when my son is getting ready to start school, a new sport or a new adventure. They are all around the age my hemophilia cousins would be if they would still be with us. If only I could go back in time and talk with my cousins. Ask their opinions on things. Listen to their stories. Seek their advice on how best to parent a kid with hemophilia. How I can be supportive and not restrictive. The tricks of the trade. Since I can't, I have Vaughn, Jeff, Ryan and Jay. They have survived the Hemocaust. They have seen loved ones and friends die from the bad blood in the 80's and 90's. Some of these guys have been through a positive diagnosis of HIV, Hep C or both! What I love about them is that first and foremost they live life! They take time to not only encourage me as a hemo mom but other new hemo moms, as well as, the entire hemophilia community. They have wonderfully different perspectives that I may or may not share but I respect them. Not one of them sugar coat anything and I like that. I know that hemophilia can be difficult but I also know I'm not going to bubble wrap my son. I want straight perspective from guys who didn't have prophy dosing as an option. I respect how they lived in an era of contaminated blood products and how they thrive now. I believe that we must respect our past to be grateful for our present and hopeful for our future. I hope that I am able to raise Jackson to be as awesome in advocating, spreading awareness and being a good role model for future hemophiliacs as Vaughn, Jeff, Ryan and Jay are to our community, family and me. Thank you guys for always being there for us! You are all my #hemohero. #hemolove


  1. Thank you for acknowledging the profound effect their collective experiences have had on our lives, and those of our young bleeders. #he olive to the Fantastic Four! -Cheryl

  2. What a wonderful post! Thank you for the kind words! And, keep up the excellent articles! Most of all... Give my best to Captain Jackson!