There are moments in life that seem to disappear, while others have burned into my memory. I can remember a moment that took place 20 years ago, and my heart rushes as though it happened only seconds ago. Sometimes that can be a good thing, but sometimes the…
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Both of my sons have expressed frustration at having a bleeding disorder. After experiencing a problematic infusion, each has cried out, “I hate having hemophilia!” While they are almost 10 years apart, the same response lets me know that they are “getting it.” Sticking a needle in a child’s arm…
My mighty warrior Caeleb came home from school last week with a question. “Mom,” he asked, “my knee is really messed up, isn’t it?” I couldn’t see an injury, and so I asked him what he meant by “messed up.” “I can’t run really fast like everyone else in gym class,”…
With my oldest son, who is now 21, I never worried about limitations. He played soccer for a season, and that was the extent of his athletic pursuits. He just did not like sports and to this day, he does not understand the basics of a football game,…
I recently spoke to members of the Sangre de Oro Chapter of the National Hemophilia Foundation, based in Albuquerque, New Mexico. They are my family. We gathered to “kick off” the upcoming Unite for Bleeding Disorders walk. We had a friendly competition to see whose team…
I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the…
I couldn’t believe Caeleb was about to get his first dose of Hemlibra (emicizumab-kxwh). I have been following several people whose children participated in the Hemlibra study (NCT02622321) before the Food and Drug Administration approved the therapy, and I saw how it changed their lives. After…
When my sons were born and diagnosed with hemophilia, we lived in Houston and had access to the Gulf States Hemophilia and Thrombophilia Center. I had access to treatment and never considered that I’d be kept from it. When my youngest, Caeleb, was only 7 months old, my…
There are moments that forever alter lives. Sometimes we celebrate educational goals, while others encounter the excitement of new love. Other times leave us breathless as we attempt to rise again from a catastrophic event, unsure whether we will ever recover. Whatever we experience, our worlds change and none of…
I have a few rituals on Sunday evenings. I check to make sure clothes are washed and ready for the week, I set the menu so that we have a plan for dinner throughout the week, and I fill the infusing bucket and bring it to the…
