I’ve been sick for most of this week with digestive issues. This is a chronic condition for me, but it always bothers me when it happens. I’m weak and unable to do much. I must gauge my energy levels and try to squeeze important tasks into the moments I…
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“MacDonald the Older,” which I call my eldest son, successfully auditioned for the International Performing Arts Institute, a national musical theater symposium. He calls me nearly every night to share the great things he learned in different classes. My heart leaps up and down with joy when I hear his…
My youngest son, Caeleb, is embarking on a new adventure and studying for his driver’s test. Once he earns his permit, we’ll take him to the church parking lot for practice. Caeleb is thrilled at the thought of driving to school and band rehearsals. He is growing up and realizing…
One of the good things about being married to a person with disability (PwD) is that I can talk to my husband, Jared, objectively about disability and chronic illness. We often have conversations about it, and we aren’t afraid of self-criticism. In fact, we value it for the sake of…
I recently accompanied my youngest son to his comprehensive checkup at the Ted R. Montoya Hemophilia Program and Treatment Center. Located in Albuquerque and affiliated with the University of New Mexico hospital system, the center serves as our main treatment facility for hemophilia. “MacDonald the Younger” started seeing the…
Two weekends ago, my husband, Jared, had a lengthy bleeding episode. It happened after a fun Father’s Day trip to the zoo with our baby girl, Cittie, and our nanny. We had a wonderful time filled with several firsts since pandemic lockdowns eased, including our first time out of the…
My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.
My older son came to visit us for the first time since March 2020. Although we talk almost every day, there is nothing like seeing him in person. I didn’t realize how much my soul craved communion with him. We laughed and talked about how good it is to have…
Several things often happen when a woman becomes a mother. The switch of motherly intuition flips on, and many moms can make predictions without reason. (That “gut” instinct usually serves us well.) The overwhelming love for our newborn baby is a connection that ignites and lasts a lifetime. This…
A few years ago, I took one notebook from my stationery collection and wrote on its first page: “My Official Book of Mistakes.” In this notebook, I was supposed to write the mistakes I made in business so that I would work hard on not repeating them while moving forward.
Recent Posts
- Growing up before treatments for hemophilia were safe, part 1
- WHO resolution aims to address gaps in hemophilia care
- Learning how to infuse factor gave my family freedom, part 2
- Desire to help people after hemophilia diagnosis outweighs online uneasiness
- When it comes to genetic tests for hemophilia, don’t forget Grandma