NRL News

The privilege of caring for a sister with great disabilities

by | Mar 19, 2015

By Dave Andrusko

Sloane and her mother. (Courtesy Kellie C. Murphy)

Sloane and her mother. (Courtesy Kellie C. Murphy)

There is a Chris Tomlin song—“Indescribable”—in whose opening stanza there is this phrase: “From the highest of heights to the depths of the sea.”

Although they have a different connotation in Chris’s terrific song, I thought of those eleven words when I read two stories back to back earlier today. The “depths” came first.

I read about and then wrote about a mad woman in Colorado who in her sickness stabbed a woman, cut out her baby, and tried to pass the child off as her own. The mother, miraculously, survived. The poor baby did not.

Then I read an account in the Washington Post written by Kellie C. Murphy. It was the story of her family and particularly of her sister Sloane who was born in 1977 and passed away 33 years later. Their story represented the highest of heights.

You will want to read and savor Murphy’s story. If you have to tuck it away for a little bit, let me suggest here why you should not only deem it “must reading,” but also something you must forward.

A few months after Slone was born, her dad (whom Murphy describes as the emotional of her two parents) found Sloan unresponsive. This was 1977 and no one knew about Shaken Baby Syndrome.

A big, big man, her dad shook Sloan “hard,” so “this shake may have done the irreparable damage all on its own, a thought my dad will probably never get over.”

Sloane flat lined in the helicopter and was in a coma for three weeks at Children’s Hospital in Philadelphia. Multiple surgeries ensued. Sloane was diagnosed with Cerebral Palsy and her parents were told she likely would not see her first birthday.

The headline [“Taking care of my disabled sister wasn’t a burden. The pity was what I couldn’t bear”] would have you believe that the “pity” dominated their lives. But Murphy understood that for the most part, these were looks of empathy and sympathy for a child who was a couple of handfuls, especially in public.

So while that is certainly an important minor chord, the major chord is what Murphy did with the “pitying” looks “and occasional questions, like, “How do y’all do all this?”

Murphy said she always thought, “Do all what? Take care of my sister?”

Moreover, “We never pitied Sloane, and we never pitied ourselves,” Murphy writes. “Perhaps that’s why — along with many more surgeries — Sloane thrived like she did in childhood, despite being given a life expectancy of only a few months.”

You could tell from the beginning of the story how major an influence Slone was on Murphy’s life. Near the end, we see why and to what extent.

In 2010, Slone was hospitalized for an entire month, the longest hospital stay since 1977. During the same period, Murphy came down with debilitating panic attacks (she does not link the two).

I am going to offer a long excerpt here, because to paraphrase (or to add to) would be to do Murphy and you, the reader, a disservice. Murphy concludes her story

That summer, a low-dose of antidepressants with anti-anxiety properties and the care of a wonderful doctor changed my life. I taught myself how to think again. I learned to be more spontaneous and emotional, like my dad, instead of calculating and always tough, like my mom. My last panic attack was Thanksgiving weekend 2010.

One month later, on New Year’s Eve, Sloane died. She was 33 years old.

We never had her autopsied, so there was no cause of death, but I truly believe — deep down in my bones — that Sloane would’ve passed away back in March, but she wouldn’t leave this Earth, she would not leave me, until I was well again. That’s what we do in my family. We see after each other. No pity. No excuses.

I’ve been free of meds since 2011, and I’m still learning how to live again and manage my anxiety. Losing my sister was more difficult than taking care of her ever was. She taught me everything I know about strength: that you can still be strong even when you need help. Even though she completely depended on the people around her to care for her, Sloane’s strength was in the ability and willingness to keep going, and she did it for 33 years — despite having the sad eyes of the world on her.

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