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…
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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…
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.
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…
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…
And Then Came Aunt Jessie
Heroes come in all shapes and sizes. Sometimes, it is challenging to recognize the people in our lives who overcame overwhelming odds to remind us that life means more than merely accepting our condition. We must thrive, even when we face uncertain futures, painful treatments, or life-changing issues. Our champions,…
I celebrated Mother’s Day a week ago at home with my family. We held a sale at our Instagram shop for the family jewelry business and sold several Mother’s Day goodies. It was a relief that this sale was successful. Having enough resources for our family is enough of a…
Spoiler alert: This column shares brief plot details from the Netflix series “Atypical.” Caregiver fatigue is real. It’s normal, and people should talk about it. Lately, my husband and I have been watching the Netflix series “Atypical,” which focuses on the life of an autistic teenager,…
Surveys on the Sidewalk
I first noticed the survey as I headed down the street while the sun was rising last Sunday morning. A rock painted bright orange with the words “poll of the day” anchored a sheet protector. Inside, a green index card asked: “Would you rather have a lifetime subscription to Netflix…