I recently wrote a paper that compared how different religious traditions address bleeding disorders, starting with where they are mentioned in sacred texts. The study of theology is one of my many interests. As someone who identifies as a polysectarian (I’m connected to two religions, both of which often demand…

My husband, Jared, and I have an open-door policy for our friends. We warmly welcome them, whether they need a place to stay for the night, a safe haven after a tough experience, a spot to relax, or a place to celebrate life’s victories. In our home, friends become part…

Laughable. That’s how Heidi Bentz and Lucrecia E. Choto, two women who struggled for years to receive a proper diagnosis of von Willebrand disease (VWD), described the results of a 2004 survey by the U.S. Centers for Disease Control and Prevention (CDC) of 75 women who…

Modern psychology often emphasizes the importance of letting go. In a world constantly pushing us to hold on tightly, learning to let go can be surprisingly liberating. As I get older, I’m realizing the significance of discerning what truly matters in life and cutting out the fluff. Our capacity…

What’s new, month of May? Why hello there, extended coronavirus lockdown!   Our community quarantine was set to end on April 30. In the last few days of April, I felt so excited to go back to how life was before COVID-19. I missed going out, eating…

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman,…

One of my favorite musicals is “Into the Woods,” with a book by James Lapine and music and lyrics by Stephen Sondheim. One of its roles that I wish I could perform is the Baker, but that’s for another time. In the show, the woods serve as a…

My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves…

I faced my old friend, the medical supplies boxes, still not believing the task ahead of me. I almost spoke to the six boxes stacked on top of one another. “I am sorry,” I wanted to say, “but we do not need you any longer. We must move on.” Each…

So, we are in the car. Everyone is in their respective seats. We are all looking forward to our vacation. The car is filled with suitcases and excitement. Then, I hear the dreaded sentence from my youngest boy: “Daddy, my leg hurts.” My wife and I look at…