When Mike began losing some weight, the doctor explained it as normal. “He’s growing taller and becoming more active. He’s perfectly fine.” Although Maggie wanted to change pediatricians, I was reluctant. What the doctor said made sense to me. Perhaps we were overreacting to Mike’s symptoms. When I mentioned some of Mike’s behavior to co-workers, their response was often comforting, “I wouldn’t worry about it. All kids lose their baby fat and there’s been a lot of stuff going around. He’ll be fine.” And that’s exactly what I wanted to hear. I didn’t want to consider any other possibility that could be worse. God wouldn’t let that happen to Maggie. Not after she lost her first baby.
However, over the next six months Mike continued to lose some weight and have occasional bouts of projectile vomiting with no fever or similar symptoms to indicate he was ill. Getting a different doctor was no longer a matter for discussion. Maggie changed pediatricians and never asked for my opinion.
She was right.
Several months later, on a routine office visit to our new pediatrician, after a physical exam and several reflex tests, we were told to take Mike to the hospital emergency room. The doctor explained that he was concerned about Mike’s reflex reactions as well as his continuing weight loss and felt that additional tests in the hospital were needed.
Mike was hospitalized and received numerous tests for the next four days (MRI’s were not available yet) before a tumor was discovered in his brain. Maggie and I were told that delicate surgery had to be performed and although the tumor was benign, it was slow growing could not be removed – only managed by future surgeries. Mike survived the craniotomy, but was totally blind afterwards. Maggie and I didn’t care about his blindness. Our son was alive and we could deal with the rest.
Following is a short story in which I try to capture what turned out to be a not unfamiliar evening at our home.
“Whaaat! Why are you poking me? I wasn’t snoring!”
“I think it’s Mike,” Maggie whispers. “I think Mike’s at the door.”
Half awake, I lie there and listen. Nothing. Blinking the sleep from my eyes, I look at the digital clock on the nightstand. It’s 2:33 a.m. A few seconds of silence pass and then I hear a barely audible knock.
“Mom?” Mike calls through the door.
Maggie knew he was there before he even knocked. She sleeps a mother’s sleep and knows when any of her children need her—especially Mike. Sometimes I think she lies in bed next to me all night, just waiting and listening.
Maggie’s halfway to the door before I can I lift myself to one elbow, “What is it, Mike?” I ask.
“I’m sorry, Dad. I’ve got a headache.” His voice is strained.
Maggie has already opened the door and is kneeling next to Mike cupping his face in her hands. “How bad is it, Mike?”
“It hurts a lot, Mom.”
It’s not a simple headache. Headaches for Mike are never simple. Not since age three when his brain tumor was discovered and the doctors told us that although benign and slow growing, it was in such a sensitive part of his brain that they couldn't remove all of it —they could only manage it with future surgeries. Not get rid of it, “manage” it. We were quick to accept that because if Mike would come through this alive, we could handle this. It didn’t even matter that he went blind after surgery. He survived and we could deal with the rest.
Now it’s been four years since then and mornings like this are happening far too often.
Maggie embraces Mike, kisses his forehead, and tells him everything’s going to be just fine. “It’s only a headache, Mike. You need to get back to sleep. I’ll get some aspirin and sit with you until it’s gone. Don’t worry. It’ll go away.”
I watch mother and child in this tender exchange. Yet, I see the concern in Maggie’s eyes as worry creases her forehead. A mother’s caress shouldn’t be tainted with fear. Maggie motions me to come to Mike as she goes downstairs to get the aspirin and water. Before I can usher Mike back to his bed and get him under his blanket, Maggie is in the room.
“Here you go honey.” She gives Mike the aspirin and helps him guide the glass of water to his mouth so he doesn’t spill any from his sitting position. After a couple of sips, he begins to slide under the blanket while Maggie fluffs his pillow. The moonlight catches Mike’s face as he lays his head down and squints with pain. Maggie caresses his cheek then sits on the edge of his bed stroking his hair. “It’ll be okay, Mike. Don’t worry. It’ll be okay.”
I don’t know if Mike worries the way we do. Maybe all he cares about is that his head is hurting and all he worries about is stopping the pain. Maybe he never wonders why this is happening so often. So long as we can give him something to stop his head from hurting, maybe that’s where his thoughts end. He’s seven years old. How much can he know about the tumor and the shunt and all the potential consequences? At least that’s what I want to believe because it makes it easier for me. Why should a little kid have to worry about death?
I leave Mike’s room and return to our bed. As I sit in the dark, upright against the headboard, waiting for Maggie, my mind drags me to that place I hate to go—that place Maggie and I have been visiting far too frequently now. I know she’s already there, even while she sits with Mike.
The knot in my stomach tightens with every passing minute. I glance at the clock. It’s been a half hour since Mike woke us. I want to go to see how he is, but I know Maggie is by his side and there’s little I can do. I sit in bed and wait—going in and out of that awful place.
Our bedroom door opens a sliver. As Maggie slides through and closes the door behind her, I turn on the light. Startled that I’m still awake, she whispers, “Oh, I’m sorry. I thought you were sleeping.”
“How is he?”
“He’s asleep, but I don’t know for how long.” Her voice is weary and the words almost crawl from her mouth. She walks, bent and heavy, to her side of the bed and joins me sitting against the headboard. Maggie’s eyes are vacant as she stares straight ahead through the closed bedroom door.
I hate nights like this. I want to slip under my covers, away from this place in my head, and fall asleep until the morning when Mike will be his usual cheerful self. Then the lost sleep won’t matter. I’m hoping that it’s nothing more than a bad headache and that the aspirin will work, and we’ll have our boy back in a few hours— asking for breakfast. And I’ll just be “Dad” sitting across the kitchen table; tousling his hair and watching him eat his cereal.
I turn my head to Maggie and ask the question that has but one answer I want to hear. “Do you think it’s just a headache?” I want her to tell me she’s certain that’s all it is and that Mike was smiling and cheerful before he fell asleep. That’s what I want to hear.
“I don’t know, Dennis. I, I hope so... I don’t know.” There’s such agony in Maggie’s voice – halting and high. “Maybe we should call the doctor, to see what he says? This is the third time this month.”
I’m quick to reply, “You know he’s going to tell us to bring him to the ER, just to be safe. I don’t want to have to go through that again. The last two times we brought him in, it was nothing. Can’t we just wait to see if the headache goes away?”
Maggie turns to me. Her eyes are silver with tears. I know what she’s thinking. We’ve been going to this place so many times we don’t have to say it out loud anymore. Her fears are my fears. What happens if we wait and it is the tumor? Precious moments could be critical. What if it’s nothing again and we rush him to the ER, thirty miles from home, and they poke and prod him and give him an IV and an MRI ?—all of which Mike hates, but trooper that he is, he never complains. And what if it turns out to be just a bad headache, as it has before, and we put him, and we put us, through this terrible, terrible ordeal for nothing?
Too many “what ifs?”
“Maybe you’re right,” Maggie sighs. “We’ll wait to see if he feels better.”
Maggie and I sit in bed, hands touching, afraid to move. As if sitting there quietly will make it all go away. Not knowing if what we’re doing is right and so afraid it could be terribly wrong. Maggie inches nearer. I place my left arm around her shoulder and pull her tight. Her body melts into mine. We sit there, saying nothing, hoping the aspirin works, listening and waiting for the next soft knock on the door.