Downs - not out...

“Relax,” said the night man,

“We are programmed to receive.

You can check in anytime you like,

But you can never leave!”

- Felder, Frey, Henley:

Hotel California

“Honey…honey,” she squealed as she saw me come around the corner.  

She charged down the hall with that hallmark unstable gait that made her look like she was going to fall over sideways with every step.  She threw her arm around my legs, stood on my feet and hugged me for all she was worth.

When I arrived on the unit, there was little doubt Shelley was ‘my’ girl…my girl. 

It was the late 1970s and I was in the second year of my doctoral program.  I was taking a course that required I spend a couple of nights a week at the university hospital pediatric cancer ward. 

The blessing – the curse…

I have always had the capacity to not over think coming events in my life.  This has been a gift, and sometimes a curse.  It was a gift in the military, meaning I simply got up each day and faced whatever had been planned for me.  Basic training, okay…specialty training, that was fine…Vietnam, let’s do it... Since there was little I could do about the system, this attitude minimized my stress levels.  It has also been the same in matters of the heart for me.  Don’t over think…go with the flow. 

In the military, this served me well – I survived.  In matters of the heart, I have soared to the mountaintop and been crushed in the “…valley of the shadow of death!!”  Of little doubt a curse.

The circumstance…

My task wasn’t very complicated.  I showed up Tuesday and Thursday evenings for an hour and a half and played games with children, who for the most part would never see puberty.  I have always liked youngsters, so I thought this might be a good experience.

These kids were all somewhere between seven and eleven, and for the most part looked pretty much the same.  Shaven heads…sallow skin…no longer any self-consciousness…the brightness and sparkle in their eyes adding a visual contradiction.  


They had the look of some future race of children from a science fiction film, but this was no fantasy.  Each of them had a death warrant and as they slipped away one by one, would bring both closure and sorrow to the families upon whom this terminal sentence would be equally shared. 

Equally??  Not so equally, for it is the living who carry this forward, isn’t it??

The task at hand…

They were surprisingly enthusiastic when I showed up.  There was a box filled with board games for the older ones, some balls and small toys for the younger.  I told a story each evening and brought my guitar to sing a song or two, because…well, I didn’t know what else to do.  I felt somehow out of my element, but they had a kind of wisdom and a surprising amount of loving tolerance, that made me feel, by the end of most evenings together, my visits were meaningful.

I had actually compartmentalized this pretty well.  I knew they were terminal, and when I arrived for an evening and one of them had lost the battle, I was saddened, but seemed to be able to handle it and go on – you know, above the fray…or so it seemed.  However, the cumulative affect of these children’s deaths would haunt me for years.  I mean, what was the point?

The unexpected…

But then there was Shelley…damn!  Somehow she got under my skin and travelled through the circulatory system of my spiritual body, lodging herself firmly in my heart.  Something happened in my tenure at this “…hotel California…” that touched me so deeply, that as I write these words so many years later, tears gently fall.

Shelley had Down’s syndrome, and in addition to all the complications that can happen to a child born with this disorder, she had terminal cancer.  Often these kids are intellectually impaired, have seizures, hearing loss, visual impairments, upper respiratory problems and a host of other problems.  Shelley had them all, and a little more.  In addition to this, she was a behavioral problem!

The biggest difficulty was her incontinence.  As a result she was kept in a diaper, which she hated!  The nurses would put them on her and she would take them off.  Shelley was 10, of fair size and stubborn with a capital ‘S!’ Keeping her in diapers was problematic. 

One evening, I suggested to the charge nurse they put her in panties rather than the diaper to see what she would do.  For some reason known only to the gods, she put panties on the girl and Shelley never soiled herself again!  While she had cognitive problems, she wasn’t stupid.  What she really wanted – and could not express – was to simply be like the other girls.

Love at third sight…

By the second or third week of my 16-week tenure at the hospital, I had fallen hopelessly in love with this quirky little girl, who ran to me without fail every time I entered the children’s ward.  Her glasses never stayed squarely on her face…she enjoyed making bodily sounds – laughing out loud – and almost always smiled when she looked at me.  Like any situation of the heart, I cannot really say what it was or how it happened, but from that point forward I was her “…Honey, Honey…” 

I found myself looking forward to those evenings.  No matter how difficult Shelley had been during the day or week, when I showed up, she would calm down and become a model patient.  Neither the nurses nor I were sure what caused this, but they also looked forward to my visits.

Just before Christmas of that year, Shelley needed bowel surgery.  She had obstructed and they went in to remove the blockage.  I stayed with her that night at the hospital.  She was still medicated, but would open her eyes from time to time and look to see if I were still there.  She would smile and quietly say, “…honey, honey…” We held hands and she would drift away, only to open her eyes again, smile and utter those words.

She survived the surgery, much to my delight and I headed home for Christmas break.  I thought of her quite a bit those couple of weeks at home and picked up a little present for her.  I had been surprised how special and natural it had become for us to see one another.  I made a decision to continue to visit her, even though my assignment was finished.

Back from the holiday…

I got back to school on the weekend and headed to the hospital to see how my girl was doing.  When I entered the ward, the charge nurse came to me, put her arms around me and softly said, “Shelley didn’t make it…complications from the surgery.  She died over the holidays.”  I was stunned…had I not been in this woman’s arms I’m not sure I would have been able to stand.  This, of course, was not possible…this was Shelley…my girl!

That night the entire nursing staff from the day shift took me out to console me.  They had lots to say about their work and their families and I realized, while I was a small cog in the wheel of their lives, my time there had meant something.  I remember that evening with a sense of bittersweet gratitude for these heroic people whose profession was daily filled with loss.

It’s been more than 36 years since that little girl captured my heart, yet every time I think of her my thoughts drift to some magic place where I am sure she is free…where I realize how little it really takes when the spirit is clean and the love pure.

Every once and awhile, in the quiet of the night, she comes like an ill-gaited fairy princess, stumbling down the hallway of my mind to wrap her arms around the legs of her prince…a moment of secure love…a little time with her “…honey, honey…”

- ted