Baby, tell me… I forget…

At the time I was pregnant with my first child I was also a caregiver for people living with AIDS. My husband and I had been the Tuesday night volunteer team for three years in a row. We passed out medications on schedule, changed bandages, made dinner according to dietary restrictions and cravings, logged behaviors and were present.

Three Cedars was an extraordinary place in the early 90s in that there were only four paid staff members and the rest of the 30 member staff were volunteers. Six hours would go by without a paid staff member being on the premises.  I think it worked because we didn’t know it couldn’t.  It worked because we were pioneers with deep, deep compassion and commitment to loving people.

No one at Three Cedars ever asked a resident how they acquired AIDS.  We honestly didn’t care.  We wanted to know what gave them life, what gave them joy and then surround them in those elements.  We did our best to reunite families, but most times families were estranged and we created our own. There was such misunderstanding about AIDS.

This was at a time when medicinal cocktails merely prolonged life or diminished pain.  We insisted that people came to Three Cedars to live, but at that time, once someone came to us, we knew that they would die here in the safety and love our arms.  Our goal was to make that transition as dignified and humane as possible.

When I was a volunteer, we couldn’t afford to take any moment for granted.  Man, could we celebrate! We’d lie out a special feast for just about any holiday and even make up some holidays. Anything to lift spirits and get our boys eating. We got supermarkets and restaurants to donate their finest food in order to entice our residents to eat well. The medicines at that time made people so nauseous that eating was usually laborious.

We also changed wounds, inserted suppositories, changed diapers… nothing phased the seasoned volunteers. I could change a bandage of a herpes lesion without batting an eye so gingerly that the person receiving my care would only moan slightly in discomfort.

As I became more obviously pregnant it became harder and harder for me to change people’s diapers or perform the heavy lifting required of some bandage changes.  But I’d cheerfully waddle around passing out medications, reading to people, or cooking up gourmet meals. The men loved touching my belly.  I think most people fight back the urge to fondle pregnant bellies, but there was a special, delightful inhibition at Three Cedars.

One of the men had dementia and his mind regressed to that of a small boy’s was especially fascinated with my belly. Martin would rest his head on my roundness while I read him stories.  We would curl up like that for hours.  When the baby moved he would squeal and trace the movement with his fingers.

Dementia is a very individual process.  My great grandmother had Alzheimer’s for years before she died, so I was familiar with the symptoms. But each resident was different.  Some would get nasty and throw food at me if the order wasn’t right.  Some would wander from room to room not quite knowing what they were looking for.  Some would become involved in deep philosophical conversations but could never recall anyone’s name. And some would go through the entire disease never experiencing dementia at all. Martin regressed to the mind and emotional state of a child about the age of six.

Martin was about 6 feel tall and weighed about 110 lbs. toward the end of his life.  I had to play games with his food to get him to eat.  I would make smiley face pancakes and fruit salad in the shape of bunny rabbits.  If he finished his plate clean I’d give him an ice cream cone treat.

On Christmas Eve we couldn’t get him to stay in his bed. He was overly stimulated with the all the festivities. I was huge by that time and tired in my last trimester.  My husband sweetly offered to clean the kitchen so I could rest. But as soon as I’d settle down in my favorite chair with my feet up, I’d hear Martin over his intercom singing children’s Christmas carols.  And then I’d hear Cecil, the man next to Martin holler for Martin to "shut up, I’m trying to sleep."  I pattered up to Martin’s to tuck him back in and gently ask him to be a good boy and go to sleep.  This went on for three or four times and I was getting awfully exasperated.

Usually Martin went to bed after his bedtime story, but the excitement of Christmas Eve was too much for him. I heard Cecil holler for me to "Put Martin’s ass in Time Out" as I trudged to the top of the stairs one more time.  I took a deep breath before going into

Martin’s room.  I was starting to get ticked off and question my readiness for motherhood. I was seriously weighing the wisdom of putting Martin in Time Out.

I pulled open the door with determination. Before me was a grown man in a diaper sitting on the side of his bed, bouncing up and down an, clapping his hands. In a sing-song voice he was repeating over and over, "Santa Clause is coming! Santa Clause is coming!" absolutely beaming with anticipation.

All frustration drained through my feet. Here was a man abandoned by his family with a brain so simplified it didn’t even register the enormous pain in which his body was immersed.  Here was a boy waiting for Santa Clause surrounded by a makeshift family with presents under the tree fulfilling his list of Tonka trucks and Legos and a stocking filled with candy that I just knew he’d shove in his mouth as quickly as he could unwrap.

"Martin," I whispered, "Santa won’t come unless good little boys are asleep…" Martin gasped, cupped his mouth, and then leaped under the covers.

"Rub my back until I fall asleep," he begged.  Before he rolled over he kissed my belly. I rubbed and hummed a lullaby until his breathing was a steady, slow rhythm. I wasn’t far behind him.

Two months later I gave birth to a strong baby boy.  On the way back from the hospital my husband and I came to Three Cedars before even going home.  I wanted to show the residents my baby before he got all baby-germy and therefore became a hazard to the health of the residents.

Martin was still there.  Busy with a Lego creation.  He leapt up and ran over when I came in with the baby. He was fascinated with the bundle I was gingerly holding.

I’d never held a baby that small, and I still couldn’t believe it he was mine. The staff and residents were all gathered around admiring our first Three Cedars Baby.

Martin leaned in and very quietly asked if he could hold the baby. I held out the tiny bundle for him to take, much to the dismay of the staff who was giving me The Look.  In a sense I had just handed my newborn over to a 6 year old boy capable of 6 year old temper tantrums. Martin shuffled out of the room and into his room.  I stopped one of the staff who was going after him.  I bent my head to the monitor in the dining room.  We could hear Martin with the baby.

"Baby, tell me what it’s like.  I forget…. Tell me again what it’s like."  There was silence except for newborn grunts and gurgles.  We all held our breath. Martin came shuffling back out with the infant in his arms and handed him back to me.

Martin died within 24 hours peacefully, surrounded by people who loved him and respected him.

Religious Education happens when we stare horrible tragedy down and respond with graceful love and acceptance.  Religious Education is the transformation we experience when we leap into justice work with faith as our safety net.

2 thoughts on “Baby, tell me… I forget…

  1. This is an incredibly touching post. In 1989 my husband and I brought home a 3 year old little boy with AIDS. We were the first family in North Carolina to knowingly adopt a child with AIDS. He was infected prior to birth and his brain was affected. He had cerebral palsy as well as other intellectual impairments, mental health issues and behavioral problems. He was the 5th child we adopted. We remember the isolation, the abandonment (even my own family abandoned me), the uncertainty of life. We were told this child would not live to be 5 years old. We thought we could do anything for two years. He was among the first for most of the cocktails (being in experimental program after experimental program at Duke Hospital). He was absolutely the most wonderful incredible teacher I have ever had. He would turn 24 in 9 days. On June 20, 2003 he finished his work here on this earth with us at the age of 17. He also died peacefully in his sleep after knowing that he had made a difference for so many people and was loved and respected by those around him.

    Thank you for sharing your story. It brought me back to my story and how my son transformed my life and the lives of everyone he had contact with. My faith was my safety net and my salvation during the time since his death.

  2. Happy, joyful tears!! Thank you Tandi for reminding me again of the essential loveliness of life.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s