After years of sacrifice to provide care for his ill stepson, Stephen Acker asks, ‘What about me?’
All our plans for the future came to a screeching halt in November of 2000. Scott, my stepson, then eight years old, was rushed to emergency, as he was extremely ill. After X-rays, he was rushed to surgery. We anxiously awaited word for hours. Later, the attending physician came in and drew both sets of parents away from the others. Diagnosis: Scott experienced malrotation of his bowel, which developed a volvulus, cutting off blood supply to his intestines. They removed most of his small intestine and part of his large. We were devastated.
I could go into detail about his recovery, our instruction on how to give TPN, ostomy care, suitability for transplant, successive visits to doctors and hospitals, etc., etc. We have enough material to fill a book. I’m not going to talk about that here. I want to talk about me.
Understand, my wife and I had only been married for three years at this point. After my first fiasco of a marriage, I was very particular about what I wanted and needed as a life partner. Kathy met almost every criterion I had on my list. (Yes, I actually made a list!) A chronically ill stepson was definitely not on my list.
I consider myself a good man and in no way was I copping out on this ordeal. Pride wouldn’t let me. Honor wouldn’t let me. Responsibility wouldn’t let me. Compassion for Scott and my wife wouldn’t let me. But in retrospect, if I’d known this was coming, I’d undoubtedly have run the other way.
I learned how to flush Scott’s central line and how to connect him up to his twice daily feedings of TPN. I learned to remove, clean, and replace a fresh ostomy bag. I learned how to slowly administer his Zofran so as not to risk seizures. I learned about all the aspects of home care for Scott and out of necessity, Kathy and I rotated these duties so we could both continue to work. Scott’s condition started to deteriorate and Kathy and I decided to move to Pittsburgh in March 2002. From the beginning, Children’s Hospital in Pittsburgh was our choice for providing for Scott’s extended care. Because of Scott’s needs and the need for reliable insurance coverage, Kathy and I decided that she would continue to work and I would stay home with Scott. Besides being Mr. Mom, and nurse, I was also his teacher for home schooling.
After a couple of false starts, Scott finally got his transplant in July 2002. We were warned that a transplant was not a cure. We were warned …
Continued use of TPN destroys the liver. Even though survival rates for small bowel transplants were 50% after the first year and declined even more after that, we felt the transplant was his best chance. There were complications.
Financially, we couldn’t afford to stay in Pittsburgh. Back home, our house didn’t sell. We moved back to Tennessee in April 2003. Scott developed ulcers in his intestines that resulted in rectal bleeds. Most of the time, we had to take him back to Pittsburgh for treatment.
2006 was a bad year. Scott had a severe bleed and was airlifted to Children’s. They couldn’t stop the blood flow. They kept pumping the blood into him and lost count after 20 units. It did finally subside, and they stemmed the flow. Scott was either in-patient or outpatient at Children’s for a good six months of that year. Kathy stayed with him the whole time. I worked out an arrangement with my employer to work four 10-hour days and drove the 7.5 hours back to Pittsburgh after work each Thursday. I’d head back home Sunday afternoon so I could be back to work early Monday morning.
In succeeding years, in addition to occasional bleeds, Scott has suffered chronic pain. He’s been on pain meds, including narcotics, for the past three years.
I have to say that through most of the time since his condition started I’ve been there for Scott and Kathy. I’ve lived up to what they’ve expected of me, and I’ve lived up to what I expected of myself.
I’ve told you some of what I did. What I haven’t told you is how I felt. I was at war within myself. More than anything else, I’d feel resentful and angry. What about my plans for my life? I didn’t bargain for this! Where the hell is his dad? This isn’t even my kid. Why did I have to give up my career, lose my retirement and savings, put my dreams on hold?
Totally selfish, right? The better part of me would say, “If not you, who? Scott knows the only two people he can depend upon are you and his mom. Whose shoulder is Kathy going to cry on when she’s overcome with uncertainty and grief?”
My rollercoaster ride was even further complicated by the love/hate relationship I had with Scott. Step away from me for a bit and look at Scott. Talk about uncertainty! Talk about future plans? What future? Talk about loss of control over one’s life—this kid doesn’t know if he’ll be alive from one day to the next. Can you imagine the fear, anger, and resentment he must feel? I admit I can’t.
Unfortunately, all this fear, anger, and resentment had to come out. As stepdad—normally a position that is precarious at best—I became the recipient of most of his resentment. Because of what I’d done and how I’d been there for him from the beginning I felt unjustly maligned. It all came to a head one evening when Scott was mouthing off to me. I’d had enough of his arrogant attitude, his moodiness, and his disrespect. He’d pushed the last of my buttons. I jumped out of my chair, heading for him on the couch. He bolted for his room where I caught up with him. Kathy was close on my heels, trying to calm me down. I grabbed Scott by the scruff of the neck and with inches between his face and mine, told him in no uncertain terms that I’d no longer tolerate his treatment of me, and if he wanted to see the light of another day, he’d better back off. I had not really lost control of myself—I had no intention of hurting him, but I was close to crossing the line. I didn’t realize how close until I walked away and went out on the front porch. I started to shake uncontrollably. All the pent up rage inside of me had to go somewhere. It was some minutes before I could get myself under control. When I did, I went to Kathy and told her I couldn’t stay there anymore—I was afraid that if I did, I’d hurt Scott, and Kathy agreed. I lived apart from Kathy and Scott for six months.
What makes for a good man? Is it always living up to his highest ideals and never faltering or failing? Or is it, instead, trying one’s best—sometimes succeeding and sometimes failing but ever willing to get back up and try again? I hope it’s the latter; otherwise I’m not a good man.
I did move back home. We’ve all learned to take what life has to offer—good or bad—one day at a time. Scott and I continue our love/hate relationship—mostly love. Scott is presently in drug rehab trying to find alternatives to narcotics for pain control. How he chooses to respond is up to him. He knows his mom and I are rooting for him.
As for me, I’m grateful for whatever this day brings.
—Photo UNC – CFC – USFK/Flickr