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The Question I Ask Myself to Help Calm My Fear About My Child's Rare Disease

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Our family just returned from an incredible trip to the Grand Canyon. I have always wanted to visit this natural wonder, so I was thrilled when my in-laws offered us a free stay at their time-share property in Sedona. My husband and I marveled at the sunsets and moonrises among the red rocks, and explored the South Rim of the Grand Canyon in awe, all with our 13-month-old son in tow. We were glad for a chance to take a vacation together and add some variety to our routine, which is often highly dictated by the complexity of our son’s mitochondrial disease. But, as a well-meaning comment from a TSA agent reminded me, we can never truly get away from our son’s life-limiting illness.

It happened as the agent finished screening some of the many medications our son takes to stabilize his irregular body chemistry. As the agent handed the meds back to me, he kindly said, “I hope your baby gets better.” My immediate response? “He won’t.” Of course, I didn’t say that out loud. I try not to project my grief onto others, particularly when those individuals are just being kind. But, in that moment, I had to face the heartbreaking reality, yet again, that my son’s disease cannot be cured, and that his multiple symptoms will not get better. My blind baby will not get his sight back. His seizures have failed to respond to any medication. His kidneys have begun to show signs of dysfunction. He is about to have a feeding tube surgically placed because his body simply cannot produce enough energy for him to consume a full meal independently. The list goes on, and will likely continue to grow over time.

I have learned to live with the fear this knowledge brings, mostly by confronting it very deliberately, only examining the aspects of it that my heart can handle at any given point in time. But sometimes, like this time, it lands on me like a boulder. When the agent said, “I hope your baby gets better,” I smiled and said thank you, then quickly turned away to clench my jaw, hold my breath for a beat, and swallow down the volcanic sob fighting to burst out of me. Wiping away the few tears I allowed myself, I thought of a question my brother once asked me. “How was your son’s day today?”

I ask myself this question often, and it has been a lifeline in moments like this. My brother asked me this during one particularly tough stretch of caretaking, as I told him about my own anxiety as a new mom to a medically fragile child. By gently asking about my son, my brother reminded me that my emotions, which are sometimes difficult to face, do not have to shape or reflect my son’s reality.

In fact, my son has amazing days! We are fortunate that his disease does not cause him pain. He is incredibly sweet-natured, and receives so much love and positive attention. Although he is fragile, he is stable, and he’s actually had more adventures with us than some adults take in a lifetime.

So, when I’m confronted with the reality of our situation and our world begins to spin, I simply ask myself, “How was his day today?” The answer is, almost always, great. Whether we’re at the Grand Canyon, snuggled in our living room, or even at our umpteenth doctor’s appointment, I am grateful for every terrific day, and all the others in between.

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Getty Images photo via Shinyfamily

Originally published: January 4, 2018
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