A Mother’s Hope Through Hemophilia

There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want everyone to look forward to gathering and sharing our lives. I hope my sons want this, too.

When my mother was alive, not a day passed without us speaking. She never made me feel guilty, so I would call daily; it’s just what I did. I wanted to hear her voice. Unfortunately, my mother passed away when my oldest son, Julian, was only 5 weeks old, so he doesn’t remember the relationship I had with her.

Yet Julian does the same thing: He lives out of state and calls his dad and me daily. I’m not sure what I’ve done to deserve it, but I’m grateful and look forward to hearing his voice every day.

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Sometimes I step back and look at my life with amazement. I have a wonderful marriage, a new career, and two sons I look at with admiration. But there was a time I couldn’t look to the future because the present was too chaotic. The present meant living in crisis mode, going from appointment to appointment and to and from the hospital. The cycle was never-ending.

While I now look at life through hope-filled eyes, this wasn’t always the case. Recalling my sons’ younger years is painful. These years were filled with bleeds, hospitals, infusions, ports, and inhibitors. It was a time when dreaming about the future was almost impossible. I especially worried that my youngest, Caeleb, would never experience the joys of life without hemophilia threatening them.

Now I’m amazed that my boys are each standing on their own two feet. After years of living with inhibitors and complications, they are now searching for a purpose. While Julian did not have as difficult a time as Caeleb, they each suffered repercussions of their condition. Yet both are doing well.

What I’m saying isn’t exactly unique for a mother watching her sons grow up. I know the painful journey each has traveled to get where he is today. Yet I often feel guilty because life is going so well. When appointments take me to the hospital with Caeleb, I think of the parents in hospital rooms with their children. Have they gone home lately? When did they last eat a decent meal? Is their child improving?

I’m in a season of gratitude. While I’m not happy that my family experienced a painful journey with hemophilia, I’m thankful that I can look forward with hope.

At one point, I thought things would never improve. How glad I am that I was wrong. There was always a tiny shred of hope floating around during times of crisis. I simply had to search for it to discover the possibilities of the future.

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, and are intended to spark discussion about issues pertaining to hemophilia.