A week in the life of a working mom, wife, and caregiver
Sometimes the hardest thing is just making it through the hour and the day
Last week was a busy one — so busy that I didn’t even have time to think about writing this column. I told my column manager as much. But as the week settled behind me, I realized it was full of moments — some good, some not — that are worth sharing.
One highlight was the 46th Annual Moose Pass Summer Solstice Festival, our community’s annual fundraiser. Like many others, I volunteered to help make it happen. We brought food, music, drinks, and games to neighbors who came from near and far to celebrate the long daylight hours. It was joyful and exhausting in the best way.
Another bright spot: I made time for exercise. My 10-year-old son and his buddy joined me for a hike up a nearby mountain. We made it to the top, then slid down on the lingering snow. Their laughter echoing off the peaks was the kind of sound that sticks with you.
Thirdly, I spent time researching advice from clinical psychologist Becky Kennedy about parenting Deeply Feeling Kids, a term she coined for highly sensitive children and a description that fits my 7-year-old daughter, Violet, to a T. Violet has Gaucher disease, and understanding how to support her emotional world feels like one of the most important things I can do as her mom.
Of course, not everything last week was rosy. Like many working parents, I’m constantly trying to balance my kids’ summer activities with my full-time job at the U.S. Forest Service. The mom guilt hits hard, especially during summer break.
Violet attends a half-day summer school program in Seward, Alaska, which helps her work on goals in her Individualized Education Program, such as speech and writing her full name. The early 7:30 a.m. bus departure doesn’t exactly align with her natural sleep schedule, but we make it work. Wednesdays are also infusion days, which means another trip to the hospital to see our favorite nurse.
A breathtaking view of Seward, Alaska, from the vantage point of Mt. Marathon. (Photo by Marion Glaser)
Another bump in the road was a sedated dental procedure we had planned. After reviewing Violet’s medical history, the dentist decided it was too risky to proceed in the office. The procedure now needs to happen in a hospital setting. That made me sad — being labeled “high-risk” is hard to hear — but it’s also an opportunity. We’ll be able to coordinate some other necessary sedation-based tests during the same visit.
One of the hardest parts of parenting Violet right now is navigating her behavioral challenges, such as intense emotions, low frustration tolerance, a need for control, and deep shame about her diagnosis. Her highs are so high, and her lows are really low. I’m hopeful that Kennedy’s insights will help us develop better strategies.
And woven through all of this? Little League games, summer day camps, child care, house projects, visiting relatives, pets, cooking, and cleaning. By the time I got around to scrubbing the toilets last night, they had graduated from “normal dirty” to “embarrassing dirty.” And instead of showering yesterday morning, I dug a grave and held a funeral for a small songbird that flew into our window.
As for quality time with my husband? I looked at the calendar and we might be able to squeeze in a date night by August.
So, yes, it was a typical week in the life of a working mom, wife, and caregiver to a child with a rare disease. If you’re a parent reading this, I bet you know exactly what I mean. Sometimes the hardest thing is just making it through the hour, the day, and the week. But the older and wiser people tell me we’ll miss this chaos someday.
They’re probably right.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
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