How I Define Advocacy as the Father of Sons With Hemophilia

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by Joe MacDonald |

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Last Sunday, I preached about a blind man named Bartimaeus.

The people told the blind beggar to arise and go to Jesus, who wished to see him. It dawned on me that the people surrounding the man functioned as his advocates.

Upon hearing the words of Jesus, the crowd made sure that Bartimaeus understood that the one he wanted to hear his pleas was calling for him. While no one had previously given the poor man the time of day, now they all rushed to his aid to ensure that his moment of healing would not pass.

As I studied the Biblical text, I couldn’t help but admire those who advocated for the man left on the side of a Jericho road. I imagined the excitement in the eyes of those surrounding Bartimaeus, and thought about the many times I was the one advocating for my sons, who have hemophilia. I reflected on the many conversations I’ve had with doctors and medical teams to ensure that my boys received the best possible care for whatever complications they encountered. I spoke on their behalf to make sure that their needs did not go unnoticed.

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Many times, when one of my sons was struggling, I wanted to shout, “Hey, everyone, stop and look at my boy. He is frightened, and we need to provide him with answers that he can understand. He is not just a science experiment. He is a human being with feelings and emotional responses. Look beyond the science and into his heart.”

My ability to speak on behalf of my stinky sons gave the medical team much-needed information about their state of mind and any issues that might cause them anxiety. I advocated on behalf of my children so that others could understand the whole picture, and not just the science. I believe that one must consider the entire person when making healthcare decisions.

I want my boys to know that their parents will always be their greatest advocates. I hope they see that we will stop at nothing to provide them with the best care possible. When they witness us in action, it reinforces the idea that we will stand in their corners forever, no matter age or circumstance. When we commit to advocacy, we take our oath seriously, and will maintain it for the rest of our lives, never once breaking because we get angry. We weather all storms, not just a few inconveniences.

Advocacy calls us to be honest, living witnesses as we remind our loved ones each day that their lives matter. We will share their needs with those who need to know, as we stand fiercely by their sides to care for their beautifully created humanity. Advocacy means their lives will not go unnoticed, because we call attention to their existence. We will remind our loved ones that they are not alone in this world because we are standing beside them.

I hope to have the energy of Bartimaeus’ advocates as I continue to address the challenges of raising mighty sons with bleeding disorders. By continuously providing my voice, I may be a consistent presence when they’re finding solutions to their health crises. My support may provide strength in their weakest moments.

My definition of advocacy goes something like this: when a living witness speaks on one’s behalf to ensure the best outcome possible.

May this description ring true for my family, and may my boys know without a doubt that I will always lobby on their behalf. I hope to be a safe place in their lives, where they can sit down and rest. Hopefully, they grow up to become advocates for themselves, knowing that I will always support and love them with every bit of my soul.


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.


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