As parents, we are always talking about the safety of our kids, families, cars, food, neighborhoods, churches, malls etc. Let’s face it: our world is not as “safe” as it used to be, except when it comes to hemophilia!
As a mother of a very active two-year-old, a sister of a stubborn 40-year-old, and the niece of a 70-year-old who has been through the gamut, I can attest that the standards and treatment of hemophilia A have grown leaps and bounds over the last 20 years! Prophy is now the standard of practice. The generations that have abided by this new standard will not have to automatically live with blown joints, fused ankles, and daily pain. So much has changed about hemophilia as I knew as a child. Those advances helped me to be completely at peace when it was confirmed that my beautiful baby boy and only son, Benjamin, tested positive for hemophilia. . For our family, much of that inner peace comes from our faith and relationship with God. We turn to our beliefs in the good times and bad and we find reassurance there.
I never quite understood the phrase “boys will be boys” until I had my son! He is a wild child that leads with his head! Because Ben is on prophy we have always been a step ahead of the injury. To me, nothing is safer than that!
Though a few extra precautions had to be put in place, our safety standards for raising our fourth child were not all that different then his three older sisters. We still worry about stranger danger, the middle of the night fevers, and open stairways. However, hemophilia doesn’t require a childhood of bubble wrap, sitting on the sidelines or dwelling on the what if’s.
Hemophilia’s upward momentum creates a positive platform to educate those around us. It is exciting to tell others about the medical advancements that have changed those living with hemophilia and their lifestyle. I believe the more we can educate those around us, the safer our daily lives of living with hemophilia becomes. It’s like having eyes and ears everywhere. It is incredibly vital that as parents, we are acting as advocates for our children with hemophilia. It is inevitable that you will be in a situation that you know more about the disorder than the medial personal in front of you. We know that hemophilia is rare and we must give others grace and be prepared to give step-by-step instructions. Preparing ourselves for these types of encounters will keep us calm in stressful situations and insistent on proper care.
In this world of unimaginable hate and frightening encounters, we as parents can breathe a sigh of relief. We can look forward with a smile, because we have hope for our future and faith in our progress.
Stephanie lives in Michigan with her husband, Jason, and her children, Addison, (9), Elliana (7), Lilly (4) and Benjamin (2).
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.