Nine years ago, I was blessed with my oldest son Zachary. With each passing day, he grows into an exceptional young man with love and compassion for everyone he meets. His smile and dimples are infectious and can melt any mother’s heart. Zachary had been the only child for four years when my husband and I realized I was pregnant again. Myles was born in March 2012 – a healthy baby boy…or so we thought.
At his 1-year checkup, we discovered that Myles has an astigmatism (which requires glasses), peanut/tree nut allergies, clove/coconut sensitivities, and a bleeding problem. Subsequently, after several tests he was also diagnosed with severe hemophilia A. The diagnosis was devastating since there was no family history. The doctors determined that Myles diagnosis was a spontaneous gene mutation. Myles is now a typical 5-year-old boy: an energetic, inquisitive, happy, stubborn, and “clumsy” child. His current fascinations include: alligators and narwhals, sports (mostly soccer, baseball, and basketball), Yankees Baseball, University of Kentucky Basketball, and trains. Although Myles gets scrapes and bruises like most school-age children, he has had to cope with multiple, difficult-to-control nose bleeds since being diagnosed with hemophilia. To prevent serious bleeding, Myles visits the HTC three times a week for intravenous infusions of clotting factor.
I constantly remind myself this disorder shouldn’t stop him from being a typical kid and having fun…we just need to be more conscientious and proactive about him getting hurt, and to this day, I live by this motto. However, I still feel like a “helicopter” mom, hovering over many of his physical activities. I truly don’t think any parent of a child with a bleeding disorder will ever stop being a “helicopter” parent, no matter what their child’s age is.
As a stay at home mother of two boys, every day presents itself as a challenge, and not necessarily in a bad way. I try to divide my time equally between both Zachary and Myles, with balancing extracurricular activities for Zachary and Myles’ infusions and multiple doctor appointments. I have become a strong advocate for both of my children, however, more so for Myles, or so it seems. I am an active member of the Mary M. Gooley Hemophilia Center, co-chair of our annual Bleeding Disorder Walk, a volunteer board member with HFA, and most recently a new mom blogger for HFA’s ‘Infusing Love’.
Some of my blogs will be extremely long while others a bit short. Nevertheless, my intentions of sharing are sincere and honest. I hope you find comfort and strength knowing you are not alone and understand that you are part of a community and family devoted to improving the quality of life for our children.
Lindsay lives in New York with her husband, Alan, and her sons, Zachary, (9) and Myles (5).
*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.