Grateful Not to Be Where I Once Was

I’m looking forward to attending the Hemophilia Federation of America’s annual symposium, running today through Saturday. I’ll be among the community I consider family. But it’s been a few years since I attended a large conference. I’m excited about reconnecting with old friends, but I’m also a bit hesitant.

As the mother of two sons with hemophilia, I went for years rarely missing events in the bleeding disorder community. I was desperate to hear stories of others who traveled the same path as my family. Knowing I was not alone in dealing with the complications of hemophilia and inhibitors was necessary for my peace of mind.

The other essential part of attending conferences was to learn about new treatment protocols and products coming to market. Several years ago, for example, there was the dream of longer-acting factor products and products to be administered subcutaneously.

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During these years of hoping and dreaming, my youngest son, Caeleb, was in elementary school. He suffered from debilitating bleeds and an allergy to factor VIII, a standard treatment for hemophilia A. His complications were not exactly the norm. I took advantage of every conference session, hoping that I would hear something that could change my son’s life. Even if I could grab a piece of a dream to hold onto until it became a reality for my son, that’s what I needed to keep moving forward in caring for him.

Now that Caeleb is a sophomore in high school, he is the recipient of those beautiful dreams. A new treatment transformed his life. While he still has long-lasting effects from chronic pain and repeated bleeding in target joints, his quality of life is tremendously better. The dreams are his reality.

It’s strange to admit this, but I now feel a little lost as the mother of two sons with hemophilia. Thus, my hesitancy at attending the conference.

Before, my identity was tied to hemophilia. Of course, my boys still have it, but in an odd way the urgency of being at the forefront of their care is now taking a back seat. Sometimes I feel a loss in not being in constant crisis mode.

I functioned in that mode for the longest time, never knowing what each day would bring. I knew when to call the hemophilia treatment center, which seemed always to result in Caeleb being admitted to the hospital. I would pack up my laptop and work materials, and Caeleb’s toys and factor, and off we would go to the hospital, to be greeted by all the familiar nurses and techs. It was our home away from home.

It was exhausting. These years put a great deal of strain on my family, our finances, and my health. Nevertheless, I kept functioning with a laser focus to ensure my son received his needed care.

I look back on these years and am bewildered. How in the world did I manage to juggle so many responsibilities? How did I keep my emotions at bay to keep a calm head? It sometimes seems like a nightmare.

Here I am, many years later, with a son who is doing better than I ever imagined possible. I will walk into the symposium with an outlook on hemophilia and inhibitors that I never dreamed possible.

It is an outlook filled with gratitude.

That gratitude is for the lessons I learned along the way of caring for a child with a rare disorder. That gratitude is for those lessons that helped mold me into the mother that I am. Not only have these lessons enabled me to help my son, but they also helped me launch a new career, a calling that is bigger than I ever dared dream.

I’m in a different place, but I don’t want anyone to be fooled. The old Caz is still here, speaking up and advocating, but with a heart overflowing with gratitude for all I have learned.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.