It Takes a Village of Support to Raise My Son

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by Joe MacDonald |

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About seven years ago, my youngest son experienced the worst of the worst regarding hemophilia. My boy missed most of his second-grade year — 128 of approximately 180 instructional days — because of continuous breakthrough bleeding episodes followed by extended hospital stays.

Unfortunately, we could not get ahead of his bleeding disorder, and as parents, my wife and I feared that he would lose a year of school, fall behind in his academic work, and that his social development would suffer.

In our most incredible moments of fear, his teacher stepped in to help us find a way out of the hole from which we could not find relief. As far as schoolwork, she gathered materials together for my son, “MacDonald the Younger,” to work on when the painful moments associated with bleeding episodes had passed.

The excellent Child Life center on the sixth floor of the University of New Mexico Children’s Hospital offered encouragement and support to help my stinky boy catch up academically. The hospitality and gratitude provided to my son left my wife and me breathless.

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My boy’s teacher also went above and beyond her regular duties. To keep my son connected to his classmates, she allowed the students to create a fantastic poster expressing their support and encouragement for my stinky boy. When the teacher brought the poster to the hospital during a visit, my son smiled as he felt the warmth of his friends permeate the room. We honored the moment as sacred and appreciated his school’s support.

We are living testaments to the African proverb “It takes a village to raise a child.” In our experiences, we must have voices that speak hope differently and in many situations to raise a healthy child.

We need the wisdom of medical teams to direct treatment and provide care, but we also need other voices to help reinforce our boy’s overall welfare. We need dedicated teachers who go above and beyond their regular duties to help develop academic and social skills, provide educational support, and provide access to classmates who offer emotional support. These entities work together to bring our loved ones happiness and provide them with the best care possible.

We know that the final, and most important, ingredient is the support of family. My boy receives strength from the love of his mother and father. I constantly remind him that he is “fearfully and wonderfully made.” He knows that we provide a safe space for him, a place to call home. A day never goes by that he does not hear the words “I love you, son.” We hope to constantly remind him that he has a network of support that wants the very best for him as he continues his journey.

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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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