This post is part of our Easter series on the Seven Joys of Mary. Sometimes, in a season of rejoicing, tragedy strikes. Words fail. In today’s reflection, Bridget remembers baby Josue, his mother’s love, and the shock of sudden grief.
A hospital corridor can be a mysterious place, a terrible and holy threshold upon the boundary of the soul. Here you will find an opening through which you might apprehend and embrace unexperienced aspects of God. Uprooted from your ordinary days, the hospital confounds the peaceful soul with the realization that the God of daily living is also the God of sudden dying. The God of the comforting parish sanctuary is also the God of the Intensive Care Unit. The God of beeswax candle and incense is the God of vomit and pus; the God of white linen and embroidered chasuble is the God of plastic curtain and sweaty sheet; the God of organ and flute is the God of squeaky gurney wheels and crying children; the God of deep port wine and delicately embossed communion bread is the God of infected blood and wounded flesh.
The God of all those corridor smells and sights and sounds is also the God of profound silence. When despair has obliterated ordinary prayer, when the psalms fail and all words are stupid and meaningless, the mantle of loneliness surrounding me becomes a mantle of dark and wordless love. This darkness reveals the paradox of prayer: in the absence of God, all there is, is God.Suzanne Guthrie
I read this passage by an Episcopalian Priest decades ago, at my aunt’s house. I asked if I could keep the book, because these paragraphs spoke to me so profoundly. I re-read them again last weekend, after perhaps the most challenging shift of my entire life. I knew then why I had wanted to keep the words nearby.
I met Josue and his mom, Lydia, (names changed) in the early morning. They had been transferred from an outside hospital in the middle of the night. Josue was brought to us for further evaluation of a severe heart problem. He had a disease which caused his heart to grow much larger, and the muscle much bigger, than a normal baby heart. Even though the muscle was bigger, the heart was very weak. This condition is not sustainable, and eventually the heart muscle will give out.
Since we did not know a lot about Josue or his medical history, we began researching and conducting a number of tests to assist us in making the decision as to what, if anything, we could diagnose as the cause of his weakened heart, and if he was a potential candidate for a heart transplant. These are big discussions, with numerous consultations and evaluations. Every aspect of a patient’s life is examined, inclusive of socioeconomics, access to care, family support, finances, contraindications with other medical conditions or organ systems, the emotional and mental health of the patient and family.
Josue was a darling little guy, small but mighty. He greeted me with a huge smile and cooed as I examined him. He did not fuss so long as he knew that his mom was nearby. He kicked, played, and laughed. He was exclusively breastfed, which is rare for our cardiac population, as most of our patients are too weak to eat and breathe at the same time. However, it was obvious that Josue needed more nutrition than he was getting. We explored ways to provide him with more. Most often, this involves adding formula to breast milk, to enhance the number of calories a baby can get from one feeding. He was not thrilled with taking a bottle, but he learned and despite another condition which complicated his ability to latch onto the bottle, he soon became a champ.
Josue’s mom was a single mom, and her job had taken her away from her family. She asked appropriate questions, was understandably overwhelmed with the gravity of her son’s illness, and stated her commitment to whatever needed to happen. As she learned more and more what was involved in the process, she and I had numerous discussions about the implications of her situation, what it meant to walk through this, and how her job might be affected as she was unable to work remotely and had limited time off to use.
For a few days, it looked like things were going well for Josue and his mom. Afraid to leave his bedside, she stayed very close by, and we discussed potential plans she had, which included using money she had saved up to buy a home for her family and a plot of land where they could all live together in her home state. Her parents were diligent workers, but their family lived simply and with limited income. She had been fortunate to find a position which allowed her to provide for them. She was on the phone with her realtor, scouring the real estate websites, numerous times when I was in the room caring for her and for Josue. She adored him and cherished her family despite the distance and the number of years she had been away.
My last day with Josue before I had a short break from work, he struggled to stay awake. He had no interest in eating and would not latch onto his mom’s breast. A bottle was impossible for him. He began to show signs that he needed more oxygen than his body could produce through normal breathing. He became cooler and fussy, signs that his heart was working much harder, and with the extra calories he had been eating he also showed signs that his stomach was having trouble digesting. Initially in the morning, it looked like he might be able to leave the ICU and be moved to a slightly less acute observation status, but this plan was quickly ended once he became more stressed it was obvious that he still needed to be very closely watched. I left for the evening, knowing we had a plan to relieve his digestive problems, taking a break from feeding him, and instead started giving him fluids through his IV.
After two days off, I headed into my shift on Saturday morning. As I was entering the hospital, I heard two of our Nurse Practitioners talking. As I passed them, they told me we were “coding” a patient. This means that a patient’s heart has stopped or is beating too slowly to sustain life, and that the team was performing emergency measures at the bedside in attempts to keep the patient alive. This can include a number of things, such as emergency surgery or the placement of a patient on life support, placing a tube in the throat directly into the lungs to help them breathe, and giving them a large number of medicines to keep the heart pumping or to re-start it if it has stopped.
I asked which patient it was that had the emergency. They told me it was Josue. I ran immediately into the room where his mom was waiting. She was pleading with God in Spanish, begging Him not to take her son. Her cries could be heard through the hallway even though the door was closed. I sat with another nurse and asked if we could call anyone for her. She had left her phone in his room when she was escorted out, so there was no one to call at the moment. She wailed and prayed and begged. The other nurse stepped out of the room to contact the chaplain, social worker, and child development specialist that assist families in emergencies. And we waited. Two nurses and a distraught mom.
The surgeon came into the room and informed mom that the team was working as hard as they could, but that Josue’s heart was too sick to be able to successfully connect him to life support. She pleaded with the surgeon to save him. I stepped briefly out of the room to see for myself what was going on, but as I entered the hallway, I received a signal from one of the nurses that there was no hope, and that the doctors had made the decision to stop.
The doctor came into the consultation room and told Lydia her son was dead. She heard nothing else, but only cried more loudly and started shaking. I sat on the floor and had no words. What do you say to a young mother who has lost her only child? We waited a few more minutes, and the medical team swiftly cleaned up the room. I carried her into the room where her son’s body was being wrapped in a blanket. She collapsed onto a chair and held out her arms. She cried and wailed and sobbed. Deep cries that come from within the soul.
I was assigned to care for Josue and his mom for my shift. After death, there are phone calls to make, paperwork to complete, questions to ask, and tasks to undergo to prepare the patient and family for the inevitable letting go. As it was still too early for our psychosocial team to arrive, I became the support system for Lydia as she sat, unable to process or think. She asked if he could still be baptized, and I assured her that he could. There was no Catholic priest in the hospital that day, but that was my first request of the on-call chaplain upon her arrival. In the silent room, bathed in his mom’s tears, Josue was baptized.
Slowly, the other members of the team arrived at the hospital. We reached Lydia’s mom and she caught the first flight from home, which would not arrive until the evening. Mom sat and held her son for hours. We were able to assist her in some memory-making, with handprints and footprints, a bath, and dressing him in her favorite outfit for him. We took photographs for her to have, provided by our Child Development team. I attempted numerous times to get her to eat, even a small item, but she just wanted to sit with him. She napped for a small while, overwhelmed with tension and grief. We discussed what happens to the body after death, and what to expect. I held him while she stepped away to use the restroom. I talked to him as if he were still alive.
When the time came to say goodbye, I took him from mom’s arms as she wept, and placed him on his bed. We escorted her to a private room where she could wait as we transported him to the morgue and arranged accommodations and transportation. She had left her car and belongings in the city where she lived, so there was no way for her to go anywhere without assistance. We were her family until her mother, who had never met her grandson, could arrive.
The amount of tragedy on this day tore at the hearts of the staff. To see a young single mother walk through the initial hours of her son’s death, to have him one moment and not have him the next, was surreal. The doctors were stunned, the nurses kept repeating over and over and over again, “How will she get through this?”
I felt her anguish. I listened as she wept and openly questioned what happened. I asked God why this beautiful little boy, who had hardly lived, had to die. I questioned everything we had done during the course of his hospitalization, wondered if there was something that could have prevented this, wished we could rewind the tape and anticipate his sudden decline to save his mother from her pain. But this was not to be.
I worked the next day after wishing Lydia comfort and meeting her mother, a beautiful woman who kept thanking me in Spanish. I told her it was an honor to be present to her in these precious hours when Heaven meets Earth. I could not sleep that night, and the next day’s shift was even more challenging as I faced the hallway and looked into the room where Josue had died. There was already a new patient there. This is the reality of our unit. We care for the most critically ill patients in the hospital, and we have already had another patient death in the days after Josue, a baby for whom there was not any possibility of repairing his heart defect.
I spoke with Lydia a few days ago, after choosing a baptismal gown for her son which we will be sending to her. She was at home with family, making arrangements for Josue’s funeral. She sounded calm, supported, and assertive, just as she had been in the days before his death.
I rely on the words at the beginning of this post. I choose to believe that they are true. Sometimes they are all that sustain me through witnessing the excruciating pain of parents losing their children and attempting to make sense of life in their absence.
In the absence of God, all there is, is God.