My dad died last month. Because he had many friends and relatives, we wanted to make it possible for all of them to pay their respects, prompting us to wake him for two nights instead of one. There we were in the funeral home, all of us completely broken up by the sight of my father’s body, when in came Cliff, my adult son, accompanied by my husband and my other son and daughter. I had been worried about how Cliff would react to seeing his beloved Grandpa this way, but it was important for him to be part of this process of saying goodbye. We watched with curiosity, waiting for what he might do. Through the two nights’ duration of the wake and the subsequent Mass and burial we watched him, wondering what, if anything, would happen. The two of them had a close bond. In truth, all the grandchildren were special to my dad; Cliff, however, is the only grandchild with Down syndrome and had known him the longest—almost twenty-eight years—except for the oldest grandchild, forty-two-year-old Gerry.
For a person with Cliff’s intellectual challenges, there is a significant delay in processing abstract ideas such as death and time. When Cliff was thirteen, we moved from New York to Massachusetts and it was a good two months before he understood that we weren’t going to return to his yellow house on Lakeside Drive. He wasn’t able to verbalize how much he missed his school, his friends, neighborhood, his room, all the articulations of “home”. Suddenly, he seemed to have lost all interest in what once made him happy. He stayed in his room more, smiled less, and his colorful personality turned a dim gray. Tears fell from his eyes at random times for no reason apparent to me. Cliff is a young man who doesn’t cry, another anomaly I can’t explain. I couldn’t remember a time when he cried other than when he was small. I brought these concerns to the finest doctor I knew, Boston’s Dr. Allen Crocker, who met Cliff and me one afternoon in his office at Children’s Hospital; he surmised that Cliff was depressed. I had suspected as much, and was both dismayed and clueless about how to help him. We decided the best course of action was to begin a regimen of anti-depressant medication as well as a search for activities that he might enjoy. At first, I had to practically drag him kicking and screaming to each activity but once there, he perked up. Within a couple of weeks of starting the anti-depressant, the black curtain was pulled back, revealing once again the sunny disposition with which he was born. Three months later, the medication was discontinued and he was happily acclimated to his new surroundings.
I have been preparing Cliff for my dad’s death for several months. Taking walks at our town common, helping him with his bath, putting him to bed, all became opportunities to talk about it. “Grandpa is old and his body hurts him,” I’d say. I would tell him that when someone’s body doesn’t “work” right, they die and go to Heaven, and we can’t see that person anymore. “I think Grandpa will die soon and go to Heaven, Cliff. We’re going to miss him and that will be a sad, sad time.” It is not clear to me what he absorbed of those conversations.
On a snowy, cold night in January, the moment I had dreaded had arrived. Cliff entered the room in which his Grandpa was laid out. I went to him, taking his hand and leading him to the kneeler. I said, “Cliff, we’re going to say a prayer for Grandpa and tell him we love him.” Smiling, he approached, kneeling next to me. What he did then, and what he did subsequently, speaks to the innocence with which he deals with the aspects of life he doesn’t understand. He draped himself over the high part of the kneeler like a blanket and reached his hand out to touch the silky insides of the casket, observing the still form of someone he had loved in life, and who loved him back. He looked from Grandpa to me, smiling and emitting what sounded like a soft, sustained staccato-like giggle. It’s the sound he makes when he’s nervous or confused.
“Tell Grandpa ‘I love you’”, I coaxed him.
“Love you Gampa”, he said. We stood up and he walked over to my mother and hugged her for a long time. The rest of the evening and into the next one, Cliff sat contentedly in a chair, saying hello and hugging anyone who asked for hugs, and some who didn’t. He never complained once, which under normal circumstances wherein he’s sitting around for hours without food, drink or his iPod, he most certainly would have. His understanding of the situation was present on some level; he knew something awful had happened, that people were sad enough to cry, and he had to be quietly patient. I believe people with Down syndrome, particularly my son, do have the capability of insight. Because Cliff is mostly non-verbal, he has a good “EQ”, or emotional quotient, and can be sensitive to the emotions of others. In the book, Mental Wellness in Adults with Down Syndrome, the authors state that “one of the ways people with DS may compensate for a lack of abstract thinking is by being very sensitive to the feelings and emotions of others (what we call ‘emotional radar’). They often interpret and respond to other people’s behavior through this lens of understanding.”
I should add that people with Down syndrome (and let me say there are exceptions to this rule) when faced with the death of a loved one, can take up to six months to process that loss and all its implications .He/She will come to think, If my loved one is gone forever, that means he won’t sing to me anymore, won’t take me places, won’t make me laugh or hug me anymore. This is a huge worry, naturally. I have no earthly idea how or when Cliff will show his grief at a monumental loss such as this one.
When we returned to New York and visited with Grandma earlier this week, he hugged her for a long time. “Gramma, Gramma”, he said into her ear. Does he know the depth of her sadness? I tend to think he does, but whether he does or doesn’t, she felt comforted, if only for a moment. That’s all we can hope for this early in the game. If the time comes when Cliff grieves in earnest, I hope to recognize it and make it all okay, as my dad would have done for him once upon a time.