We are concerned about the plan regarding our son’s treatment …
The letter started out that way. Like many people, we lived in a culture that treated our doctors like gods. How dare we question anything! They had medical degrees, and we did not. Trust them and stay quiet.
Well, we did not keep our mouths closed. We had learned that it is OK to express our concerns to the medical team that treats our mighty men. We researched our sons’ bleeding disorders and the complications that went along with them. We could not look at scientific data with the eyes of experts in the field, but we knew our children better than anyone else. We kept track of bleeds, emotional issues associated with their respective symptoms, and infused every day of the week.
Over time, we learned how to work as a team: the medical team, my wife, and me. We talk about the early years following our sons’ diagnoses and appreciate where we are now. We learned to depend on the information we give to one another. Sharing ideas helps equip our “Manly Men” better to thrive in all facets of their lives. My boys are better because the adults learned to be better. It takes patience and trust, and the rest takes care of itself.
Today I give thanks that I was an advocate for my sons. It all started with a letter written out of love and concern for my oldest son. With a hand to pen that day, I bucked tradition and challenged a plan that did not seem to be the best fit for my family. In doing so, I developed friendships with wonderful medical professionals who still play a very crucial role in my family’s life.
Being an activist for our sons and daughters is the most important job we will have in this lifetime. They need for us to fight for their best interests until they reach the age to do so themselves. Our voices matter as we teach them how to treat and manage their chronic disorder.
How will your letter start? In today’s world, it may not be pen to paper, but more like hand to keyboard. Start the journey to advocacy. The healthcare team will be glad when you begin providing them with crucial information that they do not see in a hospital or treatment center. What you have to say is vital to your loved one’s care.
And it all starts with “Dear Doctor …”
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.