My oncologist and I were sitting in her office at the Breast Center of Memorial Sloan-Kettering Hospital, where we’d just covered all the details of my upcoming chemotherapy treatment. It was late, 9:30 p.m., and I had her undivided attention. “My son is having open-heart surgery in May for a congenital heart defect,” I said. “I have to work out my chemo schedule so I can be with him in St. Louis.”
“Absolutely,” she said.
My 31-year-old son, Dave, had assured me he wouldn’t need his dad or me to be with him during his hospitalization: his friends would help with picking up food and anything else he needed. While his dad bought into the “I’ll be fine” line, there was no way I would. How could the two of them believe that Dave wouldn’t need his parents? I was going.
Finally, he relented. “You can come, Moo, but only to give me emotional support.” Then, as the date drew closer, he asked if I’d also walk and feed his black pug, Izzy. It seemed like a good sign.
Four months earlier, while I’d been fervently researching treatment for my breast cancer, Dave had been doing the same for his condition. A month after that, he’d called to break the news: “Moo, be calm. My cardiologist told me I need heart surgery again to replace my aortic valve.” Oh, God! Dave needs me to be calm, and I’m scheduled to have a mastectomy next month. For his sake, I mimicked serenity. Underneath, my heart was breaking, and his had to be fixed.
Dave’s valve had been repaired 12 years ago, when he was just 19. Now it had to be replaced. His surgery was scheduled just one week after his MBA graduation from Washington University. My husband, Terry, and I happily celebrated Dave’s graduation and enjoyed the accompanying festivities. Then I hightailed it back to New York City for my own cancer treatment.
On Tuesday, the day before Dave’s procedure, I had my eighth of twelve chemo infusions at Sloan-Kettering, followed by a one-hour nap. I was still hazy and in slow motion from Benadryl when my husband gently shook me awake and hurried me to the airport for my return flight to St. Louis.
On Wednesday morning, Dave and I walked from his apartment down Euclid Avenue, through the lively neighborhood of Einstein Bagels, cafes, and the smoothie shop to the enormous enclave of Barnes-Jewish Hospital. He was admitted for a presurgery cardiac catheterization, to be followed by open-heart surgery the next morning. Dave was outwardly calm. I mirrored him.
The following morning, I arrived at the hospital before dawn as Dave was being prepped. Exhausted by chemo, nerves, and lack of sleep, I stretched out across the waiting-room chairs and prayed that my son would be healthy again. His surgeon called around noon to tell me that all had gone as expected. Immediately I was energized, and for the first time in weeks, I could take a full breath. I couldn’t wait to see him.
This was a far cry from the “warrior” and “worrier” parts of me that had been activated when Dave was first diagnosed with aortic insufficiency at the age of 8 and later when he had his first open-heart surgery. The type of surgery Dave had then and was having now is serious, requiring doctors to put him on a heart-lung machine, crack open his sternum, and perform a delicate operation. Back then, in my anxiety, I informed his surgeon, “No one else is permitted to operate on my son except you.” Dave was mortified, and it stuck with him. It’s safe to say I was better able to manage my feelings this time around.
By mid-afternoon, Dave was wheeled to the ICU, where he was hooked up to every conceivable piece of equipment. There were leads to all sorts of cardiac monitors, chest tubes, IV’s, an oxygen cannula, and other paraphernalia that I couldn’t account for. His chest incision was covered only by a long strip of opaque tape. Inwardly, I cringed. It was distressing to see so many lines and openings into my son’s body. I didn’t look too closely.
He was alert and relieved that the respiratory tube had been removed right after surgery. Twelve years earlier, the breathing tube had remained in his windpipe for 24 hours. Then, we’d communicated by writing notes until he’d fall back into fits of sleep, rousing seconds later to ask me again what time it was. Afterward, he told me that the daylong ordeal had felt like a month.
In the first post-op hours, Dave bantered flirtatiously with Megan, his cute and efficient nurse. I was tickled to see this. A little later, when he asked for more ice chips, I saw that she was busy, so I stood up to get them. “No, not you,” he said pointedly. “I don’t want to feel like a 2-year-old being fed by his mommy. Megan can give them to me.”
Ouch. But I didn’t let on how my heart hurt. A few hours later, while taking a break in the waiting room, I smiled as Megan came to find me: “Dave wants his madre.”
Two days later, he had a scary setback: a pleural effusion—an accumulation of excess fluid between the tissues surrounding the lungs. One of his lungs had already collapsed with worsening pain. His surgeon and ICU doctors decided to treat it by manipulating the chest tube before considering inserting another one, which would have meant a return trip to the operating room. Dave asked me to leave his room. I walked to the enclosed bridge between the ICU and the Cardiac Step-Down unit. Drained, I slid to the floor. My sense of helplessness had been building all morning. I burst into sobs.
When I finally was allowed back into his room, it was clear that Dave had been through a nightmare. In tiny, labored whispers, he told me that the procedure had been the most painful thing he’d ever gone through. He described the ICU doctor’s repeated, nervous attempts to get the chest tube to reach the fluid, and then the short, the shocking gasps of air as his lung inflated. The procedure had worked, but it took hours for the lung to fully inflate. Slumped in the hospital chair and staring, Dave endured excruciating and unyielding pain, neither speaking nor moving.
After a while, I asked him if he wanted me to leave. He whispered, “No . . . I want you to stay.” I fought my impulse to hold him. None of the things I’d have done instinctively when he was my baby, such as snuggle him, rub his back, read, sing, or dance, would have been right. All I could do was be with my son, and myself.
On Sunday, day four, Dave tried to explain why he hadn’t wanted me to stay for the chest tube procedure. “Moo, I couldn’t scream,” he said. “All I could do was let out grunts. I didn’t want you to stay because I didn’t want to see the pain on your face when you looked at me.” I knew exactly what my son meant. I didn’t think I could have borne seeing his anguish either, but I would have.
That day, he was transferred to the Cardiac Step-Down unit. By then, I’d learned to ask, “When you walk around, do you want me to go with you or stay here?” I wasn’t faulted for my occasional question when his surgeon or cardiologist came into the room to speak with him. I noticed how knowledgably Dave conversed with his doctors. Clearly, it was no longer my job to lead my son, but rather to respectfully walk alongside him.
When not at the hospital, I escorted Izzy on walks three times a day. That was in addition to the 16-block round-trip walk twice each day to the hospital in the hot, humid St. Louis weather. My feet had begun to blister. Most afternoons, I crashed in Dave’s apartment. I was now beginning to feel the cumulative effects of two months of chemo. I was fatigued and moved slowly. I wore colorful headscarves to cover my baldness. On my way home each evening, I stopped at the local smoothie shop for an organic vegetable drink, convinced it kept my blood counts up.
Dave was discharged on Tuesday, six days after surgery. The next morning, hunched over in his long johns and T-shirt, he announced, “Moo, I was dead wrong. I’m glad you came to be with me.” Inside, I smiled. Then, more tentatively, he added, “I don’t know if I’ll be ready for you to leave on Friday.” Together, we decided that I’d change my flight plans.
He took my gently offered suggestion to go to a medical supply store and buy a foam cushion wedge to help him sleep more comfortably by being upright. He progressed from catnaps to four consecutive hours of sleep a night. We both napped in the afternoons. Unable to restrain myself, I’d ask him, “How will you manage opening that heavy front door? How will you hold the leash when Izzy tugs, growling at other dogs? How will you handle bending over the washer and dryer?” When Dave told me exactly how he’d do these things, I resisted asking, “Really? Are you sure?”
We convalesced in parallel. I finished my Ken Follett book, knitted, and cuddled with Izzy. Dave watched the Cardinals and read How Dogs Think. The evening before my departure, a friend stopped by and drove him to a birthday party. I was happy to see him emerge from his healing cocoon.
Just 11 days after my son’s open-heart surgery, we walked once again down Euclid Avenue, past people brimming outside Einstein Bagels, past couples enjoying Sunday brunch at outdoor cafes, past Barnes-Jewish Hospital, to the train that would take me to the airport and back home. I schlepped my large suitcase. Dave, still pale, walked guardedly, a bit less hunched, but still fragile. When we got to the station, I leaned up close to kiss him good-bye. He said, “I wish I could hug you, but I can’t.” I looked into my son’s vulnerable eyes and felt his love. His heart was truly healing.
Roberta Rachel Omin, L.C.S.W., has a private practice specializing in family and child therapy, couples counseling, and individual psychotherapy. She has extensive experience working with medical issues and with the parents of children with special needs. She’s authored the newsletters Special Parenting Matters of Westchester and Family Matters. Contact: firstname.lastname@example.org.Tell us what you think about this article by e-mail at email@example.com, or at www.psychotherapynetworker.org. Log in and you’ll find the comment section on every page of the online Magazine.
Marriages and families are impacted when a child has special needs. How the couple navigates these waters requires necessary risking not only on behalf of their child but also for the health and well-being of their relationship.