Fearless

Five years ago I became fearless.

Things scare me and I get anxious, but the fear of not being able to handle any situation I might encounter has completely gone away. I was freed from fear when our 17 year-old son, Noah, died on Feb. 27, 2006. When Noah died, I walked into the darkest, most gut-wrenching and deeply sad place any parent can go. When I came forward from the darkness, I knew there was nothing left to fear because I survived the worst loss.

We knew he would die when he was admitted to Helen DeVos Children’s Hospital in mid-February. The pediatric pulmonologist told us that day he didn’t have long to live. If he lived, she told us, he would not return to school or ever leave the house. News like this is incomprehensible. I heard it and I shook. I gasped for breath. Of course, I didn’t want to believe it was true, but denying it seemed foolish in the face of what we’d been experiencing.

Noah was born with cerebral palsy and despite being very healthy for 16 years of his life, his 17th year crumbled down around us. Noah had a recurring pneumonia and was in and out of the hospital that year, and three times, he stopped breathing. The day he was admitted, he had a respiratory arrest in the car while my husband, Mike, was driving him to a pediatrician appointment. Mike begged Noah to hold on and not die. Noah decided that day to give us a bit more time with him.

From the day he entered the hospital until we kissed him for the last time, he lived just 11 days. Those were the longest, most exhausting days then, but now I know they went too fast.

We lived in his room at DeVos Children’s Hospital and slept at the nearby Renucci House. During those days, we became close to the staff at the hospital. We had our favorite nurses, physicians, respiratory therapists, child life specialists, chaplains and the various techs that care for young patients. I was grateful for their knowledgeable care. I came to see that people who care for sick kids and their parents are some of the most amazing people in the healthcare profession. Despite managing kids with challenging illnesses and complicated procedures and their parents, the people at DeVos were compassionate, smart and possess people-skills that I envy still.

We came to rely on the wisdom and advice of pediatric intensivist, Dominic Sanfilippo. Just a few days before Noah died, Dr. Sanfilippo was off for the weekend. We sought him out on Monday morning when he returned. We told him that Noah’s weekend had been very good. He had visitors throughout; it seemed like a hundred people came to visit. The word had gone out that his time was limited and everyone who loved him came to say hello. Or goodbye. He was delighted to see his grandparents, godparents, sister, aunts, uncles, cousins, teachers and friends from school. His grade school sweethearts, Regina, Megan and Abby, came to visit, which was especially touching. Our parish priest, Fr. Mike came and gave him last rites or, as it is called now, anointing of the sick. Noah was so cheerful and happy to be with his family and friends that people told us that he didn’t seem that ill. I started to wonder myself: Could we have misjudged? I wanted to believe we were wrong and that he could pull through.

In that Monday conversation with Dr. Sanfilippo, we talked about how we thought Noah was doing better, but the reality was his breathing was becoming shallower and the carbon dioxide in his blood was increasing. From somewhere inside of me, I gathered the courage to ask how long he thought we had. With tears in his eyes, the doctor told us it wouldn’t be long…maybe a few days at the most. “But,” he said with the knowledge of someone who treats sick kids every day, “Noah will decide when he is ready to leave.” We all stood outside the room and cried. Noah could see us through the big glass window with a Sponge Bob scene painted on it. He called for his dad and me to come in. We couldn’t go in the room and face him. Not yet. I needed time to gather myself and face Noah. I hated to let him see me cry. A kind kid, he’d always ask me “What’s wrong, Mom?” and then I’d cry some more.

I wonder sometimes where the courage comes from to bear up through something like this. While I’m a Catholic, I’ve never been very spiritual or religious. I grew up with faith and always knew I could put all my burdens on the Lord, but I don’t know if I ever really did. These burdens seemed like something I needed to not give away. They were burdens to be shared between my husband and me. I am sure I prayed and asked God to save Noah’s life. I prayed and asked to make him well, to let him suffer less. But I never asked for anything to be taken from me.

The day Noah died, I went to the David D. Hunting YMCA for a run on the track. The weather was bitter and cold and I was grateful for a place to run indoors. I remember seeing Michael Pfleghaar and Tommy Allen that morning. Oddly enough, I’d also had coffee with them the day Noah was admitted to DeVos. We talked about Noah, I ran for an hour and went back to Renucci House. I remember looking in the mirror after my shower and thinking that I looked old. I felt old. My eyes were permanently rimmed with red and dark circles; my inability to smile made me look drawn. I wondered if I would ever look like myself again.

That afternoon a nurse from Hospice arrived; we wanted to bring Noah home to live out the rest of his days. We left him in the care of Mike’s sister Janice during the meeting. We kissed him before we left the room, told him we’d be close by and that we were talking with someone about bringing him home. He smiled and, over the oxygen cone, he blew a kiss. Within a few minutes Janice came to get us. Noah’s room was full of hospital staff, anxiously working on him. Noah had made his decision and we knew better than to stop him. We could not keep death away any longer. We told the staff it was time to let him go and they stepped to the edges of the room.

We talked Noah through to the other side and comforted him. The words I spoke came from the core of my being. “It will be good there sweetie, you’ll be able to breathe again,” I told him. I thought he might like to know that. His labored breathing bothered him. I told him I was sorry. I don’t know why. I told him who would await him in heaven. We told him to not be afraid of what was coming, though we did not really know ourselves. Noah seemed unafraid. Taking another human being, especially a child from life to death is powerful and profound. As Noah journeyed forward into death, Mike and I held onto each other and to him, and then we finally let the most amazing kid we’d ever known go where he wanted to go. Home.