This week, I’m doing something I’ve never done before: stepping into the ring of politics and lobbying my congresspeople. Many of those in the bleeding disorders community gather annually in Washington, D.C., to meet with U.S. representatives and senators. The goal is simple: to remind legislators that medical care…
The singer onstage opened his mouth, and notes flew through the air, falling on the ears of everyone listening. His tone indicated a beautifully powerful lyric tenor voice as the song filled the space, hypnotizing the crowd. As he finished his first number, the crowd roared with joy. He…
My younger son, Caeleb, struggled to get to his feet and go to physical therapy today. His right ankle has very little cartilage because of hemophilia complications, and he often struggles to get around without the assistance of a cane or walker. He looked at me and…
It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…
If there’s one thing that moves me to tears, it’s sharing the love I have for my sons. I think of the million and one directions that once lay before me and how I chose to follow my heart, marry the love and joy of my life, and raise children.
Today started out like most any other day. I walked into the room of my youngest son, Caeleb, to wake him up to get ready for school. I love the ritual of turning on the lights and singing a familiar tune to my family. As I began, however, I found…
This week, my youngest son, Caeleb, visited the pediatric clinic for his last comprehensive exam there. My mind went in a million directions as I recalled meeting his hematologist, Shirley Abraham, MD. She witnessed the tough times when my son struggled through many painful spontaneous bleeding episodes because…
My oldest son, Julian, possesses many talents. Last August, he moved back home to save some money. He continues auditioning for theaters, hoping to make a living as a professional entertainer. I’m a little biased (OK, a lot), but his voice is in tip-top condition, and he can adequately compete…
As we begin a new year, I can’t help but feel the power of hope permeate the air as conversations turn to new opportunities. Those of us in the bleeding disorders community long for new treatments that offer possibilities for a better quality of life. We pray that the…
The holiday season is upon us. Often, we have our meal around a table with people we love, and we give thanks for one another’s company. The holidays are all about rituals — preparing feasts, gathering to exchange gifts, and focusing on the things that unite us. Year after…
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