When Words Matter Most

Continued from previous post… Keeping Watch By Night

 

September 8, 2017, 11:00 pm to midnight

Feeling incredulous, I now stood near my 30-year-old daughter’s hospital bed in the intensive care unit of a regional hospital in Oklahoma.  

How did Alyssa’s diagnosis of a stomach virus 2 days ago, turn into a brain tumor, hemorrhage and cancer diagnosis today? How long will Alyssa remain unconscious? Will the steroids reduce the swelling in her brain? Will she continue to breathe on her own, or will she need a ventilator? How much time has passed? When will Richard arrive?

I hovered near Alyssa’s silent form, my eyes alternating between Alyssa, her patient monitor and the wall clock. The furor of the past few hours had diminished and now, late at night, the initial shock had worn off and adrenaline rushed through my body. My teeth chattered and my hands shook, but still I shed no tears.

Mostly without words, Andre and I communicated concern and support for one another as we waited for our loved ones to arrive. The ER nurses had told us to call in Alyssa’s family and friends. Family from half a dozen states were headed our way. That night, we anticipated the arrival of my husband Richard and Andre’s parents. We discussed a plan for the night. We decided that Richard, Alyssa’s father and a physician, was the most qualified person to spend the night with Alyssa. He would understand the full scope of her illness and be the best advocate for her care. He would have to rest sitting up in a chair in the tiny ICU room. Andre would meet his parents at his home. He was absolutely exhausted from caring for Alyssa and their two small sons all week. I hoped and prayed he would get some sleep in his own bed and draw comfort from his sons and parents. I would rest in the lobby.

Our thoughts were accompanied by a ceaseless stream of chatter. The nurse in charge of Alyssa was constantly in the room and she was constantly talking. I wondered if she had any other patients in her care. But instead of being irritated by her chatter, the drone of her voice was somehow calming to me, much like the white noise setting on a sound machine. The words she spoke did not matter. They simply helped fill a silent void.

My thoughts were often on my husband. I hated that he was making the 6 hour drive alone. I kept him informed as to Alyssa’s status by phone. Thankfully, lifelong friends called him, praying desperately for Alyssa’s healing and his safety as he drove through the night. Richard also spoke with our other children, Carson and Hope, and to his siblings, Susan and Tom. I knew that dozens, even hundreds of family and friends were praying for us all. 

I had no doubt that Richard would face the road ahead with steadfast determination. Yet, I knew that as a physician, he was experiencing a pain I could not comprehend. He understood every nuance of Alyssa’s illness. That knowledge was a heavy load to bear. And more importantly, as her father, his heart was breaking. His precious daughter was in critical condition and in danger of dying. I prayed intently for his emotions – Oh Lord, please give him strength.

 

What thoughts traveled with Richard as he drove?

‘As a physician, I could not deny the facts. I knew the odds were stacked against Alyssa and that she could not survive without a miracle. I’ve seen this scenario play out a hundred times. I knew that the steroids may not work. I knew that she could stop breathing on her own at any moment. I knew that the hemorrhage could cause irreversible brain damage, stroke or death. Honestly, I could not imagine how she could survive.

‘But, the father in me could not imagine how my daughter could die. She was only 30 years old.

‘I prayed over and over again, “Please, DON’T.”

‘I called my brother Tom, who immediately offered to come. I talked to my sister Susie. Because she’s a nurse, she got it. It felt like talking to Mom.

‘These thoughts inevitably led me to imagine her funeral and even to plan the words I would speak.

‘I had the constant sense that I was standing at the edge of an abyss of total blackness. I was drawn toward it. But I knew I couldn’t succumb to that abyss, or I would be totally lost in a pit of despair. 

‘I had to get it back together before I arrived at the hospital. I knew I had to stay objective for everyone’s sake, especially Andre, Alyssa and Kim’s.

‘I thought about what I would say to Kim. I knew my first words to her would be important. She was holding herself together, waiting for me to arrive. I wanted to give her hope and strength for what lay ahead.’

 

Andre went home when his parents neared town. Shortly after, Alyssa began to deal with bouts of restlessness and agitation. Her eyes never opened, but she moaned as she struggled against her arm restraints. I now saw why her bed was padded. Trying to calm her, the charge nurse gently held Alyssa’s arms and spoke in comforting tones. I followed her lead, softly speaking words of reassurance. Yet still Alyssa moaned and yanked at her arm restraints. It broke my heart to see her uncomprehending movements. I asked if we could remove the restraints, and the nurse complied. But Alyssa’s agitation escalated, so I asked her to reattach them. Finally, Alyssa calmed and her agitation and disquiet passed. She settled into another period of motionlessness, breathing gently through her slightly parted lips.

In the room’s pale, vanilla glow, I noticed that Alyssa’s normally full, rosy lips, so like her Dad’s, looked dry, grey and wrinkled. I asked the nurse for chapstick.  I knew it was a small gesture in the overall scheme of things, but at least it was something I COULD do to keep Alyssa more comfortable. There’s no sense in letting her lips get chapped. The nurse agreed, sought out the chapstick and quickly returned, handing me the small tube. I smoothed it with difficulty over Alyssa’s dehydrated lips, hoping it would help.

At intervals, Alyssa, eyes closed, continued to grope and tug at her restraints. Once she mumbled something about her arms. Was this a good sign? I anxiously watched Alyssa’s facial expressions, looking for some sign of comprehension on her part. I also watched the clock while the nurse’s chatter droned quietly on. Often she would ask me a question. Did I have other children? Where did I live? How old were Alyssa’s children? At some point I remember telling her about my dad’s death, over a decade earlier. I suspected she did not have any other patients in her care. She shared more information about her own family and her mother’s recent death. I got the sense that not only was she caring for Alyssa, but that she felt a responsibility to watch over me as well. She was kind. I liked her.

As midnight approached, I grew restless, waiting for Richard. I needed my husband and wanted him by my side. I know it is illogical, but deep within my heart, I truly believed that once he arrived, everything would be all right. Finally, I saw Richard standing in the doorway, illuminated by the bright hallway light. He stood tall, in a black jacket, eyes trying to penetrate the darkness. I immediately left Alyssa’s side and went to him. I was flooded with relief as he held me close. He is a foot taller than me and as I rested my head against his chest, he stroked my hair as my teeth chattered.

“This is going to be the hardest thing we’ve ever done,” he said. “But, we will get through this together.”

And I believed him with all my heart. These were the exact words that I needed to hear. No false assurances, but a steadfast reminder that whatever the future held for Alyssa, we would face it together.

 

This post is Part 6 of the story of how our journey with cancer began.  Read the rest of the story here:

Part 1: What Are the Odds?
Part 2: First Responders
Part 3: #Godlovesherbest
Part 4: The Sound of Silence
Part 5: Keeping Watch by Night
Part 6: When Words Matter Most
Part 7: Don’t Worry, Daddy
Part 8: A Mother’s Prayer

 

Photograph by Richard Harper, Aspens, New Mexico, 2019