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This Family's Lives Were Turned Upside Down by a Rare Disease Diagnosis, So They Decided to Hit the Road During the Pandemic

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Credit:
Courtesy of the Tesler family.
There we were, standing at the foot of a mountain a mountain we weren t planning on climbing. Life had taken a turn and we didn t know what to do, but we knew we had to climb. We didn t have a choice. I m not talking about my daughter s diagnosis of Rett Syndrome, a rare neurological disorder. That would certainly be considered a mountain of obstacles that we would face as parents, as partners, as a family. I m talking about a literal mountain; the one I stood at in the Badlands with my daughter, staring up toward its summit. She just watched her younger brother and dad climb, now she wanted a turn. ....

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5 Lessons I've Learned From Parenting a Child With a Rare Disease

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The author and her son. He was walking at the beach for the first time on the same day that he received a neurogenic bladder diagnosis in October 2019.
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Credit:
Courtesy of Holly Kearl
My nearly 3-year-old has an unusual body. He has lifelong colorectal and bladder differences from being born with threerarediseases and a disability. He s also a determined, mischievous, and creative child whom I love very much.
As I parent him, there have been many days when I ve experienced both big highs and big lows and at first that surprised me how could I feel such opposing feelings at once? ....

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