A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,” the photograph…

In our marriage, my husband, Jared, and I are equals. He may have chronic illnesses, which means there are certain adjustments he must make to have a semblance of normalcy in everyday life. I have psychological issues as well. But we strive to be equal partners. Sometimes we are imbalanced.

I love the months of October and November. Leaves change colors, and the air is crisp and cool. It also is the season when we take a moment to count our blessings. I am referring to the things that bring us joy. Sometimes in our chaos with chronic illness, we…

This year, my flower garden has grown exponentially. A wonderful gift that “bloomed” from my COVID-19 boredom was the chance to develop my horticultural skills. I increased my rose collection from six bushes to 14, and I added sunflowers, teddy bear sunflowers, zinnias, wildflowers, poppies,…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

Wouldn’t it have been nice to receive an instruction manual when first diagnosed? The doctor might share a blueprint, surefire way of raising a child with a bleeding disorder: “Follow this when this happens, and all will be fine.” Those who manage chronic illnesses know full well that there…

The terrible, awful, no-good, very bad year for my family is not 2020. It was 2013. My youngest son, Caeleb, spent most of that year in the hospital. In 2013, Caeleb, who was in second grade, missed about 70 days of school due to recurring bleeding in his…

We finally got a dog! She is a 3-month-old purebred golden retriever. It was love at first sight when we saw her at the pet store. From our very first interactions, we knew she was the one. We named her Lucky because the golden color of her coat is associated…

Life in the hospital can overwhelm us and leave us beaten down, as if we fought a war to end all wars. We exist by preparing for the next nurse, technician, or doctor to enter the room to check on our loved one. In our case, “MacDonald the Younger” suffered…

I have never heard anyone say, “I wish I could relive middle school.” It is a time when bodies rage with hormones and kids are gangly and awkward with acne and questions. It is also a time when grace is not extended to others. Kids can be mean.