Columns

When my first son was 6 months old, we experienced our initial reception into the world of hemophilia. Until that point, his bleeding disorder had not reared its ugly head. This was his first internal bleed into a joint (his ankle), and we prepared to find a vein to…

“Fine.” People have asked hundreds of times how my family and I were doing — particularly my youngest son, Caeleb, given his hemophilia — and I’ve replied with that single word. Caeleb is now 15, and his hemophilia is under control. But several of his younger years were spent…

I recently asked my husband, Jared, who has hemophilia, a this-or-that question: “Would you rather have many insignificant bleeds several times a month, or big bleeds several times a year that keep you bedridden for an entire month?” Jared chose the former, and I agreed. As a busy mom and entrepreneur,…

In past columns, I wrote about moments of absolute hopelessness — no more prevalent than the times when hemophilia reared its ugly head in my sons’ lives. There were many instances when powerlessness dominated my thinking as one of my sons screamed out in pain because he felt…

There is no shame in raising the white flag when caregiving challenges become too taxing. The white flag, an international symbol used when someone seeks a truce or ceasefire, usually is the last recourse after a long list of possibilities has been exhausted. For a parent or caregiver, it…

A few years ago, I went to a tattoo convention. Before I could enter, I was required to sign a liability release. The form said that people with bleeding disorders (and a long list of other conditions) should not get tattoos. Needless to say, I am not always a…

When I tell people I’m married to someone with hemophilia, I get different reactions. Some people are genuinely curious and want to know more about my husband’s condition. They’ll ask several questions about the hows and whys of his bleeds, and are often curious about treatment. On the other hand,…

One thing that struck me over the head when I became a parent was an awareness that I bring my whole self to the table. When treating bleeds and other surprises, I show up with what I know — no more, no less. I cannot respond to my child beyond…

Rap sessions are common at bleeding disorder conferences. During these group discussions, people come together to talk about similar interests, such as a new diagnosis in the family, inhibitors, or what it’s like being a hemo parent. Facilitators help the participants ask questions of one another and have meaningful…

After an entire year of getting little exercise, I’ve finally decided to work out again. I’d gone several months without much physical activity, so I’m starting with jump rope fitness for body conditioning. So far, everything’s good. I’ve had to rearrange my schedule quite a bit and take more time…