Jelly Bean

The phone tickled my side and I knew what it meant. Super Social Worker called me from the Acute Care Unit in Pediatrics and said, “It’ll only be a few minutes and they want you here.”
“OK. I’m on the way.”

My little Honda Hybrid isn’t made for speed and I don’t speed anyway but it handles nicely. The trip to the hospital from across town was – shall we say – well done. As I puffed my way from the parking deck, my mantra was, “Hang on Jelly. Please. I wanna see you before you go. Hang on Jelly.” When I steamed into the room, I saw grandma holding her and grandpa sitting on the bed opposite and well with in hugging distance. Jelly was dying.
I made it in time to say goodbye.

Jelly was a phenomenal little girl. She was two and a half when her life ended. What made her so special was that she wasn’t supposed to live through the day she was born. In fact, her rather high-powered specialists declared her un-alive. After all she had no brain. Well, she had a little nubbin of one but she was really um – you know – sort of alive. It didn’t make sense to the white coats who live by the numbers. When her little body shook and shivered, they declared that it wasn’t a seizure because she didn’t have a brain and seizures were brain activity. It kinda reminds me of something young boys say specifically to nauseate young girls; “Hmm, looks like it, smells like it, tastes like it, good thing I didn’t step in it.” The kicker was when they refused to make her an organ donor because she couldn’t be declared brain dead - she didn’t have a brain. Now I know there are other issues around that but give me a break! Sooner or later we have to get our heads out of the numbers, come down out of sterile labs, wipe the florescent light out of our eyes and get a little sense. Some people just need to go ahead and step in it. It doesn’t hurt a damn thing, fellas and it washes off.

Really, Jelly had great care from her medical team but what sustained her was the power grid she lived in. Her caregivers were her grandparents. They arrived at a hospital soon after her birth near here and found Jelly in the Neonatal Intensive Care Unit; her basinet pushed to the side. When they wanted to know why she was over there out of the way, the rather calloused and insensitive staff just shrugged and said that she was dying. The grandparents were incredulous. This beautiful baby didn’t look dead to them – in fact, she looked pretty good and after ‘lighting into the staff and raising enough hell to rattle the gates of heaven,' Jelly got the attention she deserved.

That’s where this power grid came together because M&M (grandparents) immediately began tapping the resources they needed to keep Jelly alive. She got a hospice team from us and even got the best pediatric nutritionist in the state, my wife, Sweet Dottie Ann. I didn’t know Jelly then and Dottie Ann never told me who she was but I heard plenty about her anonymously. When I got my promotion to Peds, Jelly was the first patient Dottie and I could talk about over coffee in the morning. The power grid included M&M’s family, church and a collection of smoochy little girls that M&M have flitting around that house lovin’ and huggin’ on Jelly enough to wear the skin off of her. The fact is that the grid she lived on was charged with love of all sorts, styles and from many sources.

As a pastoral counselor I was fascinated to watch a family so healthy that it could not only overcome its dysfunction but also turn it into something healing and life sustaining. As a minister I was often staggered by the way I saw the kingdom of Christ operating around a little girl with no brain and no hope to live a typical life. As a philosopher and post-modern theologian, I couldn’t take my mind off of the existential meaning of the single-minded attention M&M gave to this little one’s life. As a man, I admired the sensuality of this couple that could nurture, protect and offer love as they did.

We buried Jelly today. I was invited to “Make some comments.” I worked for hours on a trip to Raleigh and back last night and even in spare moments while I was with some friends. I sorted ideas, the poetry of her life and the meaning of Jelly’s two and a half years to come up something that could match the profundity of what I experienced in that home. When I tackled it again this morning, I knew I couldn’t begin to say enough. All I could do was say something that might make my hearers pay attention to the power of the love of God that pours through us when it has a chance.