What was your call to caregiving?

I've been on both sides, the one needing care, and the caregiver. 

A few years ago, I had a significant medical emergency and wake up call. I was in excellent health, highly athletic in my early 40s, and was completely blindsided one morning. To make a long story short, I had a stroke caused by holes in my heart. These were congenital birth defects I didn’t know I had. The holes needed to be closed, and I went through that experience solo due to pandemic protocols. It was the scariest experience I’ve been through so far. 

That said, I came out feeling like I had a second lease on life. My doctors told me that my excellent health helped me to make a full recovery quickly. They also said the stroke saved me and there’s a whole backstory on why that is that I won’t get into here. I count my blessings.

Rewind back to the day of my incident. My husband had a scheduled surgical procedure that same morning. His procedure was one of several that were recommended based on chronic symptoms. He’d been to a neurologist before, but his symptoms persisted and seemed to be more than repetitive movement injury. The four surgical procedures were recommended by an orthopedist, not his neurologist. After that, about seven years after the first checks, he saw another neurologist. At that point, we learned he has a rare disease. Unfortunately, the surgical procedures he had would not address his condition, which is permanent, and progressive. At least we now knew the cause.

Navigating the health system to get my husband connected with doctors who were knowledgeable about this rare disease and adapting around it was my entry into caregiving beyond being a mom. Our journey with rare disease has expanded beyond him. We are in it together. I share our story after arriving at a place of acceptance. 

This is dedicated to our family and friends who are part of our journey. XO