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“We’ve learned to ride the waves when the seas are the rockiest.”

By Sarah Hart

I think I truly became a parent after my daughter Leah became very ill at the age of sixteen. I was always frightened of hospitals and illness, but I knew that sitting on the sidelines was not going to be an option when my daughter's health and well-being were at stake. Although I opted out of being in the room when she had her kidney biopsy performed, I accompanied her to all of her doctor visits and stayed with her in the hospital.

Watching your child suffer is so painful, but I learned that I was stronger than I had imagined.

Although the first five years after her diagnosis for MPGN (a rare chronic autoimmune kidney disease) were difficult, they did not prepare us at all for the challenges of this past year. Because Leah is on immunosuppressants, she is more susceptible to infections. Last year, she suffered from several serious infections and was hospitalized for almost all of January at UCSF Benioff Children’s Hospital. I spent many days and nights there watching her suffer and trying to help her deal with her very complex health issues. She was brave, but I knew that I had to be braver. I needed to be prepared any time of the day or night if she called out to me, and I knew that I needed to work to keep my own fears at bay. Watching your child suffer is so painful, but I learned that I was stronger than I had imagined. Many days, I would walk the halls of the hospital and see others who were in similar or even worse circumstances. At times, I really felt fortunate. I had faith that we would walk out of the hospital, and I knew that was not an option for all.

So many people helped us in our journey. Calls, texts, flowers, cupcakes, and visits from kind friends and family members sustained us. The doctors and nurses cared for Leah as a human, not just as a patient, and that is such a gift. Although Leah's disease is chronic, our focus on the disease does not have to be chronic. Our Option B has been to learn to relax and embrace the times when the seas are less rocky, and to ride the waves when the seas are the rockiest. Fighting the surf only leads to swallowing too much water and getting one's face scraped in the sand.

Health, Illness & Injury Caregiving Children Chronic illness Collective resilience Family

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