By Roberta F. King
I have no memory of putting the pen to paper, but I know we signed. I don’t recall making my careless, cloud-like signature. Which one of us signed first? I may have pushed the Do Not Resuscitate papers toward Mike. It was what we both wanted for Noah. No, wanted isn’t the right word: we didn’t want Noah to die. We wanted him to live. We wanted him to come home from the hospital, recover from his lung infection and for our lives to return to what they were before he got sick. But, what we wanted and the certainty of his prognosis weren’t the same thing. The signing of the orders had to be done, so nothing would be done.
This is where the nurses meet, I thought, as we were led into a plain room. One wall was covered by an over-sized bulletin board tacked with personal notes, wage and hour regulations and a potluck party announcement. Mike and I sat on one side of a long laminated table, the pediatric intensivist, chaplain and a social worker on the other side. Between us were a dull, faded flower arrangement and a few Martha Stewart magazines with the addresses cut off. We had talked through dozens of different scenarios before this meeting, weighing our options and questioning our decisions. What seemed like the right direction one hour would be wrong the next. Separate members of Noah’s clinical team had talked with us about the orders during his hospitalization. Signing would make it official.
“If nothing is going make him better or cure him, then why are we prolonging things?” I asked.
“Keeping Noah alive just to revive him doesn’t make sense. I don’t think the tubes, oxygen and suctioning is good for him,” Mike said with a shaky voice. “It causes Noah too much pain. I hate seeing him in pain.” He stared out the window for a long bit.
“He’s suffering and I feel like we’re just keeping him alive to let him die. That’s not right,” I said, looking directly the chaplain. I knew she was on our side.
“We understand,” the doctor responded. I sighed and squeezed Mike’s hand. Perhaps our wishes wouldn’t be met with resistance or harsh questioning. I bit my lip.
If Noah couldn’t live like a normal seventeen-year-old, would his life be worth living? And Noah’s normal was already complicated—because of his cerebral palsy, he used a wheelchair, needed ankle-foot orthotics, wore arm splints, and had periodic Botox injections in his hands to loosen them up. He needed help with everything from schoolwork to getting dressed to taking showers. His daily care was a large part of our life as a family, and it was all the three of us ever knew. We cared for him now, just as we had when he was three, ten, twelve years old.
The social worker began to speak, “Mike and Roberta are the parents of Noah, who has been in the PICU for three days. His prognosis is. . .”
What did she say? I don’t remember. That his prognosis was grim? Grave? Fatal? I now realize that she didn’t finish the sentence because had I buried my face on Mike’s shoulder. The last thing I wanted to hear was this truth. Had I failed my son? I felt as if I had. All my good mothering wasn’t going to keep my son alive. My head pounded. The team waited. When I lifted my head, she continued.
“Noah’s parents have opted to sign allow natural death and do not resuscitate orders for their son. We want to make sure that they understand what we do in these situations,” she said. The doctor explained the details.
The orders would stop them from inserting a ventilator into Noah’s lungs if he couldn’t breathe on his own and it would avoid chest compressions if his heart stopped. Allow natural death orders would provide palliative care only, so our son would die comfortably. We wanted that.
Were we playing God? Hell, no. If I could have played God, I would have saved my son’s life. But there was no saving Noah. He was too ill, his lungs were badly infected and scarred. He was too weak to cough, which was the one thing he could have done to help. We could have had him put on a ventilator every time he stopped breathing, but to what end? We were told that when the vent came out, it wouldn’t be for long. Many parents take extreme measures to keep their children alive, but sometimes doing everything to save your child is too much.
Was it a selfish decision to allow him to die or was it compassionate and loving? We didn’t want Noah to live breathlessly, in pain and fear. His green eyes showed terror as he gasped for air, his face was taut and his whole body tensed from the effort. It was painful for everyone.
When Noah was admitted to the hospital, the clinical team told us if he became well enough to be released from the hospital that he’d be too fragile to leave the house. Ever. How could we force our outgoing son to live within the confines of our home? No school, no being with friends. No camp in the summer or traveling to the Florida Keys in the winter. Even such simple outings like going across the street to the yacht club for supper with his grandpa, uncle and us would be over. All the things we did as a family, both ordinary and fun would be prohibited. His life would be reduced to that of a sickly, bedridden child. That scared us as much as the thought of him dying.
We signed the orders with Noah’s quality of life in mind, as well as our own. As parents and caregivers, his ongoing illness had become our illness, too. But we didn’t want illness to be all that he owned. Noah deserved more. Life limited to a hospital or a house wasn’t right for him or us, so we chose to let our son die. Ten days later, he was ready and we didn’t interfere with his decision.
Roberta F. King lives in Muskegon, Michigan and is the vice president of PR & Marketing at Grand Rapids Community Foundation. Outside of her professional public relations writing, her articles and essays have been published in Atticus Review, Boiler Journal, Hippocampus and Lifelines (Dartmouth College Medical School), The Rapidian and in Solace. She’s completing work on a memoir about the life and death of her son, Noah. www.robertafking.com