Joseph Cramer, M.D.: A child with special needs teaches a special love

“Heather Probst, age 16, passed away Wednesday, September 19, 2012 in Salt Lake City at the Primary Children's Hospital after a six-year battle with Leukemia....

“Heather was ... the daughter of Marc and Roxanne Probst. ... She was a singer and dancer who loved everyone, and everyone loved her. ...

“She loved to go with her young women's group to plant the bulbs at the Salt Lake LDS Temple each fall and loved to see the flowers in the spring. She would kiss each bulb as she planted them.

“She loved her brothers and sisters and was the glue that held us all together. ...

“Services will be held on Heather's birthday, Monday, September 24, 2012. ... Heather loved everyone and was so grateful for the love that so many friends, family, teachers, care givers and so many others gave her.” (Click here for her complete obituary.)

Heather Probst was born with an extra chromosome of the number 21 somatic pair. This resulted in three or a trisomy 21, commonly known as Down syndrome. She was one of those kids society has categorized as one with special needs.

When you listened to her friends and teachers waiting in line to extend condolences, she was indeed special.

When my wife mentioned how Heather was well loved, her mother answered, “She loved well.”

You have to wonder if we all need an extra chromosome 21 to love like that.

Many times love is asynchronous. One starts to extend love first, and the second receives it, and mirrors it later. That occurs between parents and children. In line another mourner, the father’s boss, shared his feelings that we learn to love the ones we serve.

There is no question children with excessive genetic material, regardless which number of the chromosomal pairs, will have increased physical needs. It is the servicing of those needs that can stimulate the growth of more love. The needs expand the spectrum from mere survival to feeding to cleaning to transporting to educating to all the usual concerns of rearing a child who is different.

I don’t know if the natural tendency to love for many with trisomy 21 is from the extra genes or as a reflection of the extra care their existence demands. Did she start giving or receiving? The order doesn’t matter. It is the innocent consistency and depth that characterized Heather.

The line to show sympathies was long. Populating the queue were a lot of high school kids. They didn’t have to be there. The grieving parents may have known some but not all, so there really wasn’t any social obligation to show up. But they did. They loved her well, and she loved them well. She was the teacher. She taught love.

Children with Down syndrome never really grow up. Their mental faculties will never be consistent with their age or size. Childlike describes this arrested intellectual development. It also is the description of her love. It isn’t judgmental, and it is universal like a child.

How would it be if we all had that trait of loving without prideful judgment and without guile? What if it could be said of all of us that we were well loved and we knew how to love well?

If we loved our family, brothers and sisters like Heather did, there would be no domestic violence, child abuse or neglect.

Imagine loving a flower bulb so much that we kiss it as we plant it. Envision how our gardens would grow. Perhaps we should get up every morning and kiss the mother earth and hug the air. If we serve our neighbors as if they had special needs, imagine how we would grow closer as a human family.

A whole nation can learn to love if we collectively serve. One way is to sustain programs that assist children with expanded health needs and their families.

I wish we were all kids with special needs. Our special need would be to love well.

Joseph Cramer, M.D., is a fellow of the American Academy of Pediatrics, a practicing pediatrician for 30 years and an adjunct professor of pediatrics at the University of Utah. He can be reached at jgcramermd@yahoo.com.