Happy Birthday Helen

The call came very early yesterday morning. Helen was gone.

She had lived a very long life for an individual with Down Syndrome. In 1980 the life expectancy for someone with this disability was 25 years. In 2002 it had risen to 49. We felt very privileged to attend Helen's 60th birthday party this summer.

Helen loved her birthday. . . but I'll come back to that in a minute.

Helen was Ali's favorite client. She had been on Ali's caseload at the Center for many years and nearly every day Ali came home with a "Half-Pint" story. 

The physical characteristics of a person with Down Syndrome are very particular – round faces with almond shaped eyes, round bodies on very short and sturdy legs, a tongue that often sticks out. These individuals often have smiles that can light up a room. 

Ali tells me that many individuals with Down Syndrome have certain personality characteristics as well. They can be quite stubborn – sitting down, Indian-style and refusing to move when things aren't quite going according to plan. She also says that people with Down Syndrome are generally very happy-go-lucky and often have a very good sense of humor.

Helen had a little of all these characteristics. Several years ago, when she was in better health and working at the Industries every day she would get off the bus and run into the Program Manager's in the morning shouting, "Look! Look!" all the while holding open her lunch box. She wanted everyone to see what she had for lunch. Every day. And every day it was the same thing – a sandwich, a Little Debbie snack cake and a little plastic bottle of fruit punch. You know the kind. . .it has a little foil cap on the top.

Day in. Day out. Same lunch. If I had a pb&j sandwich every day for years I might want to hurt whoever it was that was packing my lunch.

Day in. Day out. Half-Pint doing her wobbly little dance, shouting, "Look! Look! Me so happy! Me so happy!" And every day Ali would smile and tell Helen that she was happy too, but then she would secretly wonder why "normal" people weren't nearly as happy as Half Pint. After all, we could have whatever we wanted for lunch.

Helen had her stubborn side. There were many times that at the end of the Industries work day the following page would come over the Center's intercom system, "Ali Wilkins please come to the back restrooms." She would go back there to find Half-Pint locked in a bathroom stall, sitting cross-legged on the floor. Ali, being the smallest employee, would have to shimmy under the stall enclosures to unlock the door and talk Half-Pint into getting on the bus to go home.

As she got older, Helen got a bit more stubborn and perhaps a bit more cranky – as we all do. As her health began to fail she endured more trips to the doctor and she didn't exactly find these trips pleasant. Not having the capacity to self-regulate her behaviors she expressed her discontent in a variety of vocal ways. From the back of the van Ali would hear, "Fat Hog!"and  "Bitch!" lobbed her way as Helen let everyone know what she thought of another trip to the doctor.

Everyone got called a "Fat Hog!" It was so common and amusing that it almost became an endearment. The staff at the Emergency Room knew it was Helen coming.

Helen loved to sing and she loved a good party. Christmas carols were some of her favorites. She didn't have a good grasp of the calendar or the particular season but who cares? Every day was a good day to sing Jingle Bells! She had a distinct way of singing Silent Night – with a low, gritty voice and not a lot of tune. 

But, by far, her favorite celebration and her song of choice was Happy Birthday. In Helen's mind, every day should have been her birthday. On those days that she was in the back of the van, on her way to yet another doctor visit, Ali would hear Helen singing, "Happy birthday to me. . .happy birthday to me. . ." occasionally interspersed with a loud, "Fat hog!"

Helen wasn't really 60. A more realistic count, if you go by all the times she wanted to celebrate her birthday, falls somewhere closer to 20,075. That woman did love her some birthdays. With pie, not cake. And lots and lots of balloons.

As her family and caregivers surrounded her in the hospital on Sunday night it became clear that Half-Pint was close to death. She had out-lived all kinds of expectations and her body was just plain old tired. They sat with her through that last night, laughing and telling stories. They even sang her Happy Birthday one more time. Then she was gone.

Last night Ali and I talked about whether or not, in heaven, Half-Pint would have Down Syndrome. Theologians often talk about heaven being a place of wholeness. Did Down Syndrome make Helen less than whole? I'm not sure it did.

It's Ali's theory that people with mental retardation and developmental disabilities are sometimes more whole that you and me. What their brains are "lacking" is the ability to judge. The capability to hold a grudge. The constant desire for more and more – newer and better. The places that their brains excel are in happiness, contentment and love. 

Don't believe me? Try eating a pb&j sandwich every day for a couple of years and not complaining. Then get back to me.

In writing this I realize that the stories that I tell here are only a few in what must be hundreds of "Helen stories." She touched many lives. She made many people laugh and appreciate life. All I have here are a few stories that make me think that God has such a diverse and rich creation vision. These are Ali's memories. There must be so many more.

As I contemplated all the people who loved Helen gathered around her bed in the Intensive Care Unit of the hospital very early Monday morning, softly singing Happy Birthday I was struck by the beauty of that picture. I believe it was her birthday. When she quietly slipped out of her broken and tired body and into the gates of eternity with God it truly was a new birth. From broken back into whole. From tired back into bubbly. From pain back into joy.

I can almost see the pearly gates swinging open and Half-Pint doing her wobbly dance headed right on through. I can see her running with her lunchbox, looking for God. And I can just hear God's enormous laughter. . .the first time Helen calls out, "Fat Hog!"

Happy Birthday Helen.