Every Little Inchstone

One day several years ago, my daughter lifted up her fragile hand and placed it on my arm. In most families, such a subtle gesture would not be noticed, let alone celebrated. But for my daughter Karuna, who has severe cerebral palsy and several other medical conditions, moving her hand to express her love for me is a momentous task requiring every ounce of her concentration. It was that day’s “inchstone.”

candlesParents always celebrate their children’s milestones. There are those tentative early steps, the first utterance of “Mama,” and major life events like graduating from high school or getting married. As is the case for many children with special needs, these milestones will never occur for my daughter due to her physical condition and poor prognosis.

I could let this unfortunate truth—this lack of achieved and potential milestones—drag me down into a state of hopelessness. Instead, I choose to celebrate “inchstones,” those tiny little milestones no bigger than an inch but every bit as significant. While seemingly trivial, these daily events show me that my daughter is in fact living, surviving, and thriving.

As my daughter’s disease has progressed, inchstones have become even more important. These days we celebrate a day when she keeps her oxygen levels up, or a day when she manages to stay awake. Even a big morning smile is an inchstone to celebrate.

Each little inchstone gives us a chance to celebrate her accomplishments, no matter how small. Sometimes the celebration is little more than a hug, while other times it is photos and videos e-mailed to all our friends to demonstrate just how proud we are of Karuna.

Inchstones have taught me the power of recognizing the positive in every day, not allowing the day-to-day struggles that we all experience to take over my thoughts. They have helped me to see value and accomplishment in the smallest of movements, the tiniest of steps, or the most miniscule achievements. They act as a positive force carrying me through each day, especially on those days when everything goes completely and utterly wrong,

There are definitely days—especially those days spent holding a screaming child or praying over a child fighting for her life—when it is difficult to unearth even a drop of happiness. During these times, the worst of the worst, I force myself to take a moment and jot down an inchstone or two. Inchstones bring a smile to my face and create a moment of joy in an otherwise bleak day.

Had I not learned to celebrate inchstones, surviving all of the tough times I have experienced as a caregiver would have been immeasurably more challenging. Among all the blessings that my daughter Karuna has bestowed upon me, seeing her grow through inchstones has granted me the best gift of all: the ability to see wonder and joy in the most unexpected places.

Author: Susan Agrawal • Date: 12/11/2012 • This article is adapted from an essay for the 2008 Shield Healthcare Caregiver Contest

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