I don’t know whether or not I should be apologizing. I’m assuming I’ve been doing something wrong for quite some time with the link on which I’m sending my stories. In the beginning I was receiving a number of comments from some of you who have been reading my posts - and I enjoyed responding to them. However, for quite some time now I have not received any. For a while I thought there were problems with the link, as I was being told that revisions were being made. But it’s been many months now and nothing has changed. I will continue to explore the reason for this. It is very possible that I’m simply not using the revised link correctly.
I only want you to know that if you are trying to correspond with me and are getting no answer, I’m not ignoring you; I simply don’t know how to view your response.
I would like to return to sharing some of my short stories about my family. You know from earlier short stories (A Mother’s Instinct, A Soft Knock, and Not Dad’s Day), that our son, Michael – our first born child, had surgery for a benign brain tumor at age 3 that resulted in his becoming totally blind. Because the tumor could never be completely removed and required several more surgeries to “manage” it, Maggie and I were faced with many years of medical and personal challenges.
As I mentioned in one of my earlier posts, when Mike was a young child he was in intensive care for multiple days before it was determined that he had a tumor on his optic nerves that necessitated immediate surgery. Although it was discovered that the tumor was benign and slow growing, which was good news, it was impossible to remove it completely, and in the process of minimizing it, Mike totally lost his vision. It may be difficult to believe, but the fact that Mike was now completely blind didn’t devastate Maggie and me as much as you might think. Our son was alive and that was our major concern. We could deal with the blindness.
I remember that when I returned to work, after taking a five day medical leave, my co-workers were very supportive and offered many words of encouragement. Much of what was said comforted me and I always shared those comments with Maggie when I returned home. However, one co-worker made a comment that I kept to myself. It was as if this person didn’t know what to say, but felt compelled to say something, - anything - hoping to ease the pain I was feeling. Her comment was, “Perhaps this is a blessing in disguise.” This co-worker was a former nun who was now a social worker and I’m sure she believed all crises were somehow a blessing from God – but that’s not the way I saw Mike’s blindness, not at that point. It was many years before I realized how right she was.
Mike was the oldest of our four children and, other than being blind and having a slow growing brain tumor that required considerable medical treatments, his life was very normal. I know that sounds strange, but Mike dealt with his problems as though they didn’t exist.
He was quite intelligent and worked hard to learn the skills necessitated by his loss of vision (braille, cane mobility, discovering the world through his other senses etc.). He went to our local schools with all the other neighborhood children, graduated high school at 17, and then went to a technical college in a neighboring state.
When Mike’s tumor was discovered at age 3, Maggie and I were told that, although it was benign and slow growing, the procedures to manage it would eventually be exhausted and, unless there were new medical discoveries, we couldn’t expect Mike to live into his teen years. Well, the doctors were wrong – at least about how long Mike would survive the tumor.
There were no medical break-throughs and Mike’s tumor became more and more difficult to manage. During the course of his treatment, a single shunt was implanted in his brain to help with the flow of fluid. Eventually, after many years of additional surgical interventions, it became necessary to implant a second shunt on the other side of his brain. There seemed to be minimal improvement after this procedure and the doctors appeared to be running out of options. Mike was now 22 years old and his headaches were becoming more serious and more frequent.
Following is a short story that captures a turning point in Maggie’s and my struggles with Mike’s tumor:
Natural. That’s what’s written on Mike’s death certificate under “Manner of Death”— Natural. I know it simply means that Mike didn’t die from anything out of the ordinary; and I would have been far more upset if it had read ordinary. You see, Mike was in no way ordinary, not in death and not in life.
Natural. It sounds so peaceful. For me, a natural death conjures up a certain vision; a nice, quiet, eventless death. I picture a child lying still in his bed, his chest rising and falling in short, rhythmic intervals. Both parents are standing at his side, holding hands and gazing down as a hapless smile creases their face. They take turns softly kissing him on his forehead. His eyes close slowly; a soft exhale, and he’s gone—a natural death. Or maybe a mother sits alone on the edge of her dying child’s bed, where she has sat the entire day. The sound of birds chirping outside beckons her to the window. She watches for a few seconds as two golden finches flit from branch to branch in playful courtship — just a few seconds. She turns back to her son. His eyes are closed; a hint of a smile on his lips. She moves nearer, bends over ever so slightly and gently strokes his hair. Is he sleeping? No, he’s gone— so peaceful, so beautiful, so comforting — so full of crap.
Is that really how anyone dies except in the movies?
That’s certainly not how Mike died; no, not at all. Oh, he died at home in his own bed with all of us by his side, and I guess that could be classified as natural. But it wasn’t like in the movies —nor was it what the doctor told us:
“He’ll get weaker, lose his appetite, sleep more, and gradually slip into a coma. I can’t tell you when it will happen, but it will be as if he fell asleep. Then, after perhaps a couple days, it’s hard to predict how long, he’ll pass away.”
So we learned from this and laughed at the Hollywood endings, smug in our knowledge that we knew what a sham this was—what a fairy tail.
It’s 4:00 a.m. Easter Sunday morning. A nurse asks Maggie and me to follow her to a “quieter location” in the cavernous atrium at St. Luke’s Presbyterian Hospital. We’ve been here with Mike since midnight and he’s been getting a battery of tests for several hours now. As we turn to follow the nurse, Maggie looks at me. Her eyes begin to tear as she raises both hands to her lips. Her face turns ashen and she slowly shakes her head from side to side. We both know that this is not a good sign. If everything was all right the doctor would have told us himself, right here in the middle of the atrium. We wouldn’t be being asked to go where only bad news is given.
We knew eighteen years ago that this day would come, yet it’s hard to believe that it may be here now. When Mike’s brain tumor was diagnosed at age three, we were told that although it was benign and slow growing, it couldn’t be removed. It could only be managed through shunts and periodic surgeries. We were told then that Mike probably wouldn’t live through his teen years. But Maggie and I found hope in the belief that doctors don’t know everything and that there are new breakthroughs in medical science every day. And maybe, just maybe, Mike could beat this. So, for eighteen years we did what the doctors told us to do. And Mike went through those multiple medical procedures. And we grasped tight to any little sign that his life was becoming more normal. And we prayed that the doctors were wrong. But, it looks now that maybe we were.
“The doctor will be with you shortly.”
Maggie and I sit in our assigned dimly lit corner far from the center of the atrium. We’re both exhausted from the physical and emotional stress of a couple sleepless nights and the long drive to the hospital with Mike lying restless in pain on the back seat. I’m not a nail biter, but I soon realize that that’s exactly what I’m doing. I don’t know what else to do or say, so I simply stare at my shoes, then up at the ceiling, then occasionally glance at Maggie who is rocking slowly on the edge of the couch, quickly rising to walk around the oval glass table in front of us, and darting her head behind her whenever she hears footsteps.
About ten minutes pass when two doctors in long white lab coats approach us. Both Maggie and I stiffen and bolt up to greet them. Neither is familiar to us. Dr. Sortino introduces himself as the “on call” neurosurgeon; the accompanying doctor is a resident. After shaking our hands and asking us to have a seat, both doctors sit across from us. Teetering on the edge of the couch, Maggie slips her hand in mine and squeezes. The resident shifts in his seat, looks at Maggie and me, and then quickly glances away when my eyes meet his. Dr. Sortino leans forward, folds his hands between his knees, looks directly at us, and in slow, measured words begins telling us what I’m sure we won’t want to hear,
“Mr. and Mrs. Depcik, we’ve completed the CT scan and the MRI on Michael, as well as several other tests. We’ve contacted the Chief Neurosurgeon and shared the results with him.”
Maggie squeezes my hand tighter as we slide closer to each other. My left leg begins to shake, though I don’t think anyone notices but me.
Dr. Sortino continues, “I’m so sorry. There’s nothing more we can do for Michael...”
I don’t know why this angers me, but it does. Why are you calling him Michael? His name is Mike. You don’t even know his name. How can you possibly tell me you can’t do anything else for him?
“The protein in his cranial fluids continues blocking his shunts and we’re unable to prevent that from happening, so weeee…” The rest of his comments are a fading hum—my mind remains stuck on “nothing more we can do.”
I turn to Maggie who sits rigid, but calm, and seemingly unafraid —as if she knew what we would hear.
“So it’s over?” I ask.
And I don’t know what else to say because I’m not sure what I’m feeling. The day that Maggie and I always feared would come, is now here. All those stomach churning sleepless nights, all those excruciating headaches, all those panicked drives to the emergency room, all those elusive dreams—they’re over now.
“I’m sorry, Mr. Depcik. The shunts are useless, and without them it’s only a matter of time.”
Doctor Sortino sits back, takes a deep breath, and then leans forward again. “There is another option. Not one we would recommend, but one you should know about. We could surgically implant a cranial reservoir that you would have to drain multiple times a day. However, an infection is inevitable and would be very painful. But it could extend Michael’s life for several months.”
Maggie and I sit silently, looking at each other and knowing what the other is thinking. Dr. Sortino’s eyes move slowly between the two of us, briefly fixing his gaze on me and then on Maggie—as if he’s expecting an answer now. After several seconds, Maggie looks directly at Dr. Sortino,
“This isn’t our decision to make.”