Our Lives

Our Lives: Cleaning the file cabinet

CorrespondentApril 19, 2014 

CindySchaefer.AL.050113.JEL

Cindy Schaefer.

JULI LEONARD — jleonard@newsobserver.com

Where does all this stuff come from? It’s the question I always ask during a spring cleaning frenzy.

I think I do a fairly good job of keeping the nonessentials to a minimum. I don’t have any problem donating or tossing what we don’t use. But we still have a lot of stuff.

The other weekend, I rolled up my sleeves and tackled the file cabinets. Those cabinets have been essential to my keeping track of the mounds of paperwork that go with having a couple of serious medical conditions in the house. It’s the one area that I’ve been hesitant to declutter. You just never know when you might need that particular doctor’s letter or therapy assessment. On one single dog-eared piece of paper is the two-lined report from a Pennsylvania lab confirming Kevin’s diagnosis. I wanted nothing more than to trash it the minute it arrived, but I have needed that paper countless times over the years to prove his disability.

And although my files are neatly organized, some of them had far outlived their usefulness. It was time.

Some were easier to go through than others. Fifteen years of correspondence with the Wake County Public School System. Some of it matter-of-fact: the annual reviews, progress reports. Some of it a reflection of the frustrations we have encountered: letters to administrators sent as a last resort, reports evidencing our push for needed services.

On the way to the shredder, I looked at nearly every paper in the files, reliving what it took to provide our children the education they deserved. Overall, a good experience – with a few pull-our-hair-out situations thrown in to keep us awake. Documentation from the year a school’s brand-new elevator repeatedly didn’t work and I had a school board member’s number on speed dial. (The day Kevin turned 13 he was trapped on the second floor at the end of the school day. It took five firefighters to rescue him while I gave a play-by-play to the aforementioned school board member.)

Stuffed at the back of the oldest cabinet, behind newspaper clippings and assorted brochures, was a manila folder titled “SMA.” I didn’t even remember it was there. That particular folder slowed me down by more than an hour.

As I flipped through the papers, I realized I was holding the very first collection of information we had amassed after Kevin was diagnosed with Spinal Muscular Atrophy in 1995. A thick file that contained woefully little useful information.

Back then, we were on the cusp of a technology explosion – but we hadn’t quite gotten there yet. It would be two more years before we had a computer in our home – a monster of a Mac now probably worthy of a museum display.

The doctor who handed us the verdict didn’t give us much beyond a diagnosis and a death sentence. We needed facts. And hope.

We were fortunate. My former colleagues at The N&O were quick to use their resources at the newspaper and pass along to us all that they found. Much in that folder was the fruit of my friends’ research. Another friend was a graduate student at UNC and arranged for us to access the medical library on campus. What was found there was also in that folder.

It sure wasn’t much.

So little was known about SMA. So little information for grieving parents grasping at straws to save their child. The isolation was suffocating.

Today, parents are able to connect with families around the world in an instant, forging virtual friendships with those walking the same path. The loneliness is not quite as acute. Research has advanced, and while there is still not a cure, methods of managing the disease have improved dramatically.

With that progress has come access to services and equipment once denied to families like ours. No longer can an insurer deny physical therapy to a patient who won’t make measurable progress because “he’s going to die anyway.” Those were the words I heard when I questioned the decision. Expensive machines that we had to buy on our own are now routinely covered for young patients.

I try to gently counsel families new to this life to not look too far into the future. My files show the reason: The science of a disability is constantly changing, and with it, our lives do, too. How far we have come.

And how far we still have to go.

Schaefer: cschaefer63@nc.rr.com

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