A Family That Takes Hemophilia in Stride

Both of our children have hemophilia. It is not their life; it’s part of their life. Everything isn’t centered around the hemophilia. With today’s medicines, hemophilia has been a little bit of an inconvenience. And now that Helixate^® FS no longer requires refrigeration, which is awesome, it is even less of an inconvenience. [Helixate^® FS stored in a refrigerator at 2-8^°C (36-46^°F) is stable for the period indicated by the expiration date on the label. Within this period Helixate^® FS may be stored at room temperature, not to exceed 25C (77F), for up to 3 months, such as in home treatment situations.]

My husband Donny and I have fought over things like spending too much money on the kids’ tennis shoes—but hemophilia has never been the basis of an argument. We knew I was a carrier when our son and daughter were born, but there’s been no blaming. My husband has never said, “It is your fault that our kids have hemophilia.” Our family has always been open about our hemophilia, limiting some of the shame and guilt that some families may feel when their child has a chronic disorder.

If I were able to pick them NOT to have hemophilia, of course I would choose not to have hemophilia. But if I had to pick between other diseases or disabilities and hemophilia, I’d most likely pick hemophilia. Billy, my co-worker, says, “Come to the table and put your problems on it, and 9 times out of 10, you’ll take your own problems and go home—you won’t trade.” And that’s true.

I don’t think hemophilia has played an important role in our marriage. Our family is a unit where each person is an individual with his or her own interests. Also, we have a huge extended family, which really helps. I could call any of them at any time. It’s not unusual for us to have 50 people at our house for Thanksgiving or Christmas dinner. Family and friends are very important to us.

My son Alex and my husband Donny enjoy dirt biking, fishing, riding quads, and that type of stuff. I’m a very social person. I enjoy fine dining and I’m involved in a number of organizations, such as the Oregon Hemophilia Board. Our different interests don’t come between us; they define who we are. As a family, we support each other and enjoy each other’s company. Sometimes we’ll have a family vote and the majority rules on a particular outing, and we’ll all participate in it together.

My husband and I don’t feel like we need to be attached at the hip. He does his thing, I do my thing, and we do things together. We also share common interests and goals: our family’s happiness, our children’s’ education, our friends, Kristin’s and Alex’s sports. We do not have to spend every minute together to share these things. We share our interests and goals individually, with each other, with the kids, with friends, or as a family.

We don’t have the perfect marriage. We argue like everybody else does. You don’t walk in and hear harp music. But when we have conflict, we figure it out, we’ll talk about it, and agree to disagree. You don’t have to always agree with each other.

I feel that it doesn’t matter if your child has hemophilia or any other chronic disease; you just need to give your other half space to be themselves.