DNR. Three letters which by themselves mean little, and appear quite insignificant, but when put together in combination, carry great meaning and solemnity. Aside from medical personnel, most people are unaware of their significance, and very few, if any people working on a post-partem unit had ever seen them utilized on their job. DNR- Do Not Resuscitate. The term carries with it a sense of finality; no hope. Someone who has been given the label DNR, would be allowed to die should their heart stop. No heroics, no CPR, no meds; nothing. The day Matthew's diagnosis was confirmed by the Cardiologist, we made him DNR.
The regular Pediatrician had come in later the same morning as the Cardiologist , and with eyes that seemed to be looking for a focal point, he mumbled a few hard-found words about the diagnosis, then went on to tell us how Matthew's routine newborn exam was, as if nothing were out of the ordinary. He was getting ready to make a quick exit at the completion of his report, happy for his escape, but I stopped him. "I want to make him DNR." He froze in his tracks and simply looked at me as if he didn't understand the words I had just said. I suppose very few new mothers ever asked their pediatrician to not save their baby from dying. I verbalized my request again, explaining that we understood the disease he had, and if he would develop a heart arrhythmia, we did not want to prolong his life knowing that it would only lead to an eventual, possibly painful, miserable demise anyway. He looked extremely uncomfortable in that moment; shifting his feet, still looking around at anything but me, and finally said, "sure, okay", as he shuffled his papers and headed for the door. I still to this day do not know if he ever followed through with our wishes to make Matthew DNR. I'm glad we never had to find out. I would have been very angry to discover he had not honored our request.
The next day we were discharged from the hospital and ready to go home. A few visitors had come to see us during our hospital stay, including some of my co-workers. They were the best visitors I had. One of the night shift girls sat on my bed with me in the middle of the night, just allowing me to feel and "be" in that moment. The gift of their presence, was more meaningful than they knew. There were a few presents as well; thoughtfully chosen. A picture frame to hold the precious image of our son in the years to come; little keepsake holders for storing memories of a child not long for this world, and cards which expressed heartfelt "Congratulations!", combined with hand-written words of "I'm so sorry". Somehow, those two thoughts should never need to be together in the same sentence, let alone together in one's life experience. They are the anti-thesis of each other. Yet they were fitting words since they matched our emotions surrounding this birth and this child.
Bringing home a new baby is usually a wonderful, celebrated event. Neighbors and friends come by to see the new addition; smiles, hugs, and gifts of blue; casseroles and cookies, and arguments over who gets to hold him next, all in an effort to celebrate the arrival of a new person into our world; a truly joyful time. When we came home with Matthew, our celebratory welcoming began as anyone elses. But time after time, as each visitor was told "The News", the gaiety came to a screeching halt. Smiles and laughter were instantly wiped from faces, replaced with blank stares and silence, an occasional question or two, and perhaps worse, tears. Conversation that moments ago had been bubbly and high, now became almost absent and solemn. Words were at a loss. What can a person say, after all? We had just taken one of the happiest times on the face of the earth, and smashed it completely on the cement of unfairness. There is no response which can make sense of, nor bring any hope of repair, to what has just transpired.
This pattern of celebration and joy, colliding with the words "he's going to die", and the horror they contained, occurred with almost every human encounter we had, day after day, week after week. It became routine to watch for the expected crash of emotions on the other persons face, while my own emotions became hardened, safely tucked away as I became the comforter to those who received the news for the first time. I became the one who threw out pious platitudes to make them feel better before they quickly hurried away to their own lives; running back to normalcy, while I was left with my bag-of-rocks emotions, and the increasing awareness that this journey could only be walked alone.