The worst day: Requiem for my younger brother

Joe loved the sounds of roaring and splashing water. He didn't want me to take this either.

At the Fort Donelson National Battlefield visitor center in September , I looked at the T-shirts but deferred until Maine, when the choices would be more exotic than in Tennessee. I saw the Buddy Bison, a little furry doll that would have fit among his menagerie of toy bears, but again resisted.

Later that week at the Great Escape in Nashville, I browsed the Children’s section of the vinyl section and stumbled upon a few old Sesame Street records. For a few hard seconds I contemplated buying them, knowing how much Joe like those records.

Saturday night at my parents’ house, I kept hoping for a bar or two of a Disney, Muppets or Sesame Street song to echo from his room. Nothing came.

On September 21, my Dad called around 7 a.m. He has been known to forget that on weekends, people sleep in. He is not known to leave messages, or follow with “Call ASAP” texts. The minute he answered, I knew what happened, the only thing that could make him call so early. In Saturday’s early hours, my parents heard Joe’s Rock-N-Roll Ernie doll play a song from its rock and roll repertoire. He would press the button his Ernie’s guitar when awake, but sometimes roll over onto him when asleep.

When Mom checked on him, she called for Dad because Joe didn’t seem to be breathing. A 911 call, some CPR from Dad and a trip to the hospital could not revive him. My brother was gone.

Nancy and I hit the road just before noon; nothing could keep use away on an awful day like this.Our family needed to be together. My sister threw out all the stops to get a flight from Seattle to Atlanta.

Joe had a tougher life than anyone could imagine. His seizures caused pain that we can only speculate about. Those were the ones where he didn’t catch the corner of a table or a kitchen counter and split open his scalp or forehead. That happened more than we would like to remember. He nearly drowned in the school's pool due to his love of water and fearlessness for its depths.

He spoke only a few words as a toddler. People who never met him looked upon him like a monster. It’s a facet of America’s handicapped that always bothered me. We want to care for people like him, but we don’t want to see them. My parents never shied from bringing Joe around; he was a member of the family, no matter the hand that life dealt him.

That terrible Saturday, we sat on the porch talking through a brilliant sunset. I almost jumped every time the wind struck Joe's favorite chimes. While we sat mostly silent,  I snuck away to his room. It was dark, but I could evidence of the day. The pillow where his head was propped through his last night, the sheets and comforter that had been abruptly pulled away when my parents discovered he stopped breathing. I could still follow his outline in the bed. All I could do was lie on the bed and weep in the dark.

Early Sunday morning, Nancy left early and we went to mass to hear his name read during the brief remembrance built into every Sunday service. No one could care for him as well as my Mom had; she structured her entire life around his care and fought relentlessly to ensure he got the best from life.

Sunday night, while we awaited Jenny’s arrival from Seattle, I found myself alone with the pictures and it was almost too much to bear. Everywhere I saw his face – standing in a crib, euphorically wearing Burger King crown, looking quite dashing in a suit before a wedding. In our family photo from a Hawaiian luau, Joe refused the pose for the camera. More often than not, the images captured him flashing a slight smile or a toothy grin. Along with the frames lining the home’s hallways that picture our family at almost every age, Mom has some seasonal frames she puts out.

Sipping a beer in the family room downstairs, I got snared by a frame showing Jenny, Joe and myself at three different Halloweens. Joe had his face painted in camouflage and a plastic Gamorrean Guard costume from Return of the Jedi. Mom painted up his face because he would not wear the mask. Joe flashed the bright smile of a six-year-old kid ready to circle the neighborhood for Halloween candy. In that shot, you could not tell any difference between him and any other elementary-age American boy.

The only solace from these terrible days is the vision I had for Joe ‘s future. I imagined him in some group home or institution, the rest of the us dead and Joe left without family. I didn’t want him to be alone in a home where no one knew his idiosyncrasies and he might only have one of his many tattered bears still under his arm.

He died quietly at home, ensconced in the comfortable room where he spent most of his days. All of his little bears were with him till the end. I’ll never see Joe again. He was brother, a muse of sorts, the person who kept in mind every time I’ve wanted to give up.

A month later, the random memories keep bubbling up. Last Thanksgiving, we drove with my parents and Joe to see a giant Christmas light display in a community along Lake Lanier. Occasionally in the dark, I extended the other, and Joe took hold or ran his fingers across the top of my hand. He liked to hold his hands; he showed affection that way. It was humbling to feel his affection, while feeling the affection of my lovely girlfriend.

It is heartbreaking to know that Joe’s private language is now resigned to history. For the few of us who knew it intimately, it’s an irreparable loss. We can hope that he is at peace, knowing that he has felt the pain of his last Grand Mal seizure, that he will never again face of the stares of the ignorant.

But every time I’m back in that house, I’ll be waiting futilely for him to walk out with a CD or cassette, asking in his own way for a change in music.