Columns

My wife and I met families with ties to the bleeding disorders community through our hemophilia treatment center (HTC). One day, Rita, the former chairwoman of our local National Hemophilia Foundation chapter, asked us to join the board of directors. I agreed, because who can say no to…

I’ve been struggling with hip bleeds lately. I’m in the middle of recovering from a bleed on my right hip, which may have started because I put too much pressure on it too soon. I’m frustrated that I’ve been bedridden so often these past few months. It’s hard…

“I wish that I were normal,” my mighty warrior Caeleb said as we returned from his recent orthopedic appointment. I looked at him and chuckled. “Son, there is no such thing.” I didn’t mean to make light of his comment, but the truth is that “normal” is something that…

I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate hemophilia, and even severe hemophilia. Their diagnosis is often linked to the philosophies of their hematologist or hemophilia treatment center.

For at least 30 minutes nearly every day, while buzzing along on our YMCA’s treadmill or bike, I’m captive to the machine’s built-in cable and Wi-Fi. Though we’ve gone to “the Y” for many years, I’m still fascinated that I can watch just about any program I want, provided I…

I will never forget the first time we visited my wife’s OB-GYN following the birth of “MacDonald the Older.” It was 1996, and the world of hemophilia looked much different than it does now. Synthetic products were making their way into the market. Nightmares regarding the “hemophilia…

I am a big list maker. Each day I start with a list of tasks that I need to accomplish. I find it gratifying to cross through each item once I’ve completed the job. Grocery lists, errands, and meal ideas are some of the elements on my agenda. I also…

Getting diagnosed with hemophilia is a whirlwind. It doesn’t matter if someone is diagnosed at birth or in their 40s: Their world is turned upside down. It is terrifying. Life is changed forever. I feel Father Anthony DeMello put it best in his…

I look into my son’s eyes and see beauty. I see the vibrant green, which fades into a blue that rivals the sky. Down in the lower left part is a spot of brown that never changes. His eyes give us a reflection of his soul. Though change is all…

Dear Friend, We live in a world where people want to help each other. I know you mean well, but there are a few things I need you to understand. When I tell you that my son is having a bleed and is in pain, don’t feel sorry for me.