We Are Mighty as We Face Hemophilia Challenges Together

We Are Mighty as We Face Hemophilia Challenges Together

Some of my most enjoyable moments are guy times with my boys. We laugh, we attempt to keep the house in order, and we succeed, despite ourselves. My sons, who have my blood running through their veins, remind me that life will be OK; that any problem can be solved, and we will face anything that life throws at us and triumph. Together, we are mighty!

While my boys are part of one family, and both of them have hemophilia, they are also entirely different when it comes to how their bleeding disorders manifest. My eldest son, who is 22 years old, has severe hemophilia, and yet he does not know the pain of a joint bleed.

My youngest son, who is 12, currently has port number seven inserted just below his fifth or sixth rib. I’ve lost track of the number of times he has struggled with horrible pain due to many joint bleeds. We’ve celebrated many holidays in a hospital room.

No one ever told me that a requirement to manage more than one child with a bleeding disorder was the ability to speak several languages. One son talks about hemophilia one way, while the other son uses a different vocabulary.

“MacDonald the Younger” grappled with complications that “MacDonald the Elder” could not imagine. When my wife and I speak to my sons, we must concentrate to provide them with the support they need. Each vernacular is unique to each son, and we pride ourselves on our ability to bounce back and forth between each language.

While we have discovered that there is no cookie-cutter way to experience a bleeding disorder, we do know that the way to deal with anything that hemophilia throws in our way, is to face our struggles together. In our home, no other language is more powerful than the message of strength expressed through the love we share. We might need to speak several different ways to our boys regarding issues related to their different bleeding disorders. The message of support, encouragement, and hope translates into just one dialect — the language of love.

My sons may speak about their bleeding disorders in different ways, but they are united in the incredible love that they share. The hope that they provide for each other will last a lifetime. I know that neither of my guys will ever be alone because they will always have one another.

While we speak the languages of hemophilia, my wife and I will never know what it is like to have a bleeding disorder. My sons do, and their understanding of each other gives us hope. The tie that binds them together is one that continues to be carefully woven by all of us. We share everything that we can with one another, so that we may be better and stronger together.

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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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Joe is the father of two sons with hemophilia. He and his wife Cazandra are active member in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.

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