Steven M.

Steven M., 15 December 16, '82 - January 15, '98 cardiac arrest w/complications

Thursday's Child

Monday's child is fair of face
Tuesday's child is full of grace
Wednesday's child is full of woe
Thursday's child has far to go . . .

Steven was born on a Thursday.

"He's not perfect," my ex-husband said as he tearfully laid him next to me and unwrapped the blanket so I could see his arms. I could count ten toes, but only three fingers.

A little girl once asked me, "What's wrong with that baby?" "Everything," I said, meaning it in a medical sense. "Except his personality. That's perfect."

Steven never achieved more than a six-month developmental level in 15 years. On a 15th birthday, a young man should be wearing a high school jacket to go get a driver's permit. Steven was wearing overalls from the Boys 4 - 7 and being transported to a special education school in a wheelchair.

Every mother of a child born with disabilities has to wallow in some poor-me pools. I had them until the night I went away for a weekend with three women friends, all around age 50.

They talked far into the night about their children whom society calls normal. Their children graduated from high school, went off to seek their fortunes and came back pregnant or with babies and toddlers, some in debt and jobless and they stayed and stayed. When, the mothers wondered, would they get to have their empty nest syndrome?

From then on, I told Steven, "There are some blessings to the way you are."

In fact, there were many blessings. I had what other mothers think they want, "if they could only stay little forever . . . " Feeding and diapering a child the size of a toddler was easier than if he had not been born with a growth disorder. I got to cuddle and snuggle with my boy for 15 years with silly songs, funny faces and raspberry kisses. He had a killer smile and chubby cheeks.

Steven The Imp would quickly lean forward and plunge his face into the water in his big plastic bathtub and blow bubbles. Putting on his pants was a test of both strength and will. I sent words of encouragement to his teachers and school aides. Remember that dressing Steven is no harder than putting a leotard on a wounded gorilla.

His favorite thing was being wrapped in a towel warmed in the dryer after his bath. He was always on our laps or in our arms.

Children with Steven's syndrome rarely live into adolescence so I established a burial trust fund. I mentally picked out the funeral home and the cemetery and rehearsed his funeral.

Then he would recover from the latest asthma attack, infection, anesthesia reaction, or internal bleeding and we would go on. He developed an eating disorder and then barely slept for two years.

Three of us cared for Steven around the clock ­ me, Janine, our extraordinary aide, and my husband. He's the one the saying "Anyone can be a father but it takes someone special to be a Daddy" could have been written for. We all loved Steven intensely.

I was psychotic from lack of sleep and trying to work full time since Friend of the Court demanded little to nothing of my ex-husband. If God existed, I was angry at Him too.

As I got off the hospital elevator making the much-too-familiar right turn to the pediatric unit, there was a man sitting on a bench.

He was young and pleasant looking (he had a beard; Steven loved beards) but was obviously tired. He softly said hi to me.

My instantaneous thought was that I was looking at Steven's guardian angel.

My next angry, tired, despairing thought was that there is no such thing. I said hi back and turned to look at him again but he was gone.

Steven was in his hospital crib screaming with two nurses holding him down and a doctor drawing blood in a vain attempt to find out what was causing his infection and dehydration. He was so weak during those five days in the hospital that I half expected "the" call in the middle of the night. But he rallied. Again.

He went back to school. On Thursday of that week, the art project was making Mom and Dad a very little valentine from their very little guy. The two parts of the valentines' heart were traced from his feet and toes and then woven together.

At the close of the school day, Steven was put on the school bus with his bus aide who said he seemed to peacefully nod off to sleep. Knowing him as well as she did, she soon realized that he was not asleep but unresponsive, and the bus driver radioed 911.

At about that moment, I was trying to rest before he came home and I had a vision in my twilight sleep.

In this dream, Steven was running in and out of the kitchen. (The kitchen is the warm comfort center of your home and represents your own heart, dream interpreters say.) He was giggling and holding toys, plopping on the floor, and up and running again. The God I doubted gave me the gift of seeing my son as he is now ­ perfect.

That Thursday was Martin Luther King's birthday, a day that symbolizes a struggle for freedom. I think it was also significant that Steven was on his way home.

Thursday's child went very far into the hearts of everyone he met and has influence and power beyond our comprehension.

When I think about my little boy, I ask him questions and I choose to believe that I hear his answers with my heart. The summer after he died, I watched a little boy ride a two-wheeler, pumping his legs as fast as they would go. I talked to Steven, "Is that what you're doing today ­ riding a bicycle on this beautiful day?" The response I perceived was, "Momma, I AM the bicycle."

On good nights, I dream about my son. Sometimes he's with other little children who have surprised looks on their faces. Perhaps his job is to be with other children whose longtime earthly suffering came to an end. Perhaps his pleasure is to be a bicycle or anything he wishes to be.

Today ­ 12-16-98 ­ is Steven's 16th birthday. The one thing I can celebrate is his freedom.

We are awed by the messages we get from him ­ a room suddenly filled with the smell of roses, three taps on Daddy's shoulder where Steven laid his head ­ and we feel that Thursday's child has gone far but is not far.

Linda and Larry May, Steven's Mom and Dad