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.