Columns

Embracing an Imperfect Life with ‘Amor Fati’

Life is awful from time to time. As someone with mental illness who is married to a person with hemophilia and epilepsy, I am no stranger to that thought. Various things can trigger me to ruminate on the thought that life is fickle and occasionally sadistic. It could be…

Answering the Tough Questions

As caregivers of loved ones managing chronic illness, we face questions that, when first heard, knock us to our knees. For my family, it was not so much a question as a statement. When “MacDonald the Older” was 4 years old, we set up to infuse through his port-a-cath…

Advocating Out of the Shadows and Into the Light

It’s essential that we inform the world about struggles in the bleeding disorders community by showing them how to be advocates. We must teach our loved ones how to educate and inform those in leadership about the needs faced by those with hemophilia and other disease states resulting in clotting…

Letting Go and Moving Forward

My family is preparing to move back to New Mexico. My husband’s job as a United Methodist pastor calls us to move often, so we have the moving process down to an art form. Still, it is not an easy feat. I am always in the moving mindset. Before I…

Women Must Keep Pushing for Hemophilia Diagnoses

Today my hematologist complimented me. She told me that, had I not persevered, I may have only been labeled a “carrier” and my bleeding disorder may not have been adequately understood. For me to be healthy, it is critical that my bleeding disorder is understood. My hemophilia…

My Daughter Has a Life of Her Own

My toddler, Cittie, recently got a new tricycle. She took to it instantly, although she couldn’t reach the pedals yet. The trike has a long attachment that allows us to take turns driving her around the house. Cittie was content to sit back and enjoy the ride. Now she often…

Finding the Familiar on an Old Stretch of Highway

On a recent Sunday afternoon, cabin fever got the best of my family and we headed out to see where the road would take us. Our parameters were straightforward: It had to be within an hour, and the destination had to involve water. Because local traffic has been nearly absent,…

Keeping Museum Fridays Alive

During the summer, my sons and I usually choose a museum to visit on Fridays. It started with “MacDonald the Older” and continues with “MacDonald the Younger.” I look forward to the special times that I get to celebrate with my stinky sons. I call those moments sacred, set apart…