Our Letters of Hope

On a frigid February night, our home echoed with heartbreaking moans. Our boy Evan, only four years old, was dying.

Since before he'd been born, we knew this day would come. You see, Evan was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan's syndrome.

As he lay dying, medicated with morphine and Ativan for pain, my wife and I both said silent, separate prayers. I imagined our prayers finding their way through the snow-covered roof and jumping from one star to the next, looking for an answer.

My wife, Penni, and I had been here before. This wasn't the first time Evan had been close to death. By that time though, we had learned that we couldn't afford to stay up all night with him. We have become so financially burdened that I must go to work in the morning, which means I've got to get some sleep. And Penni has to mother our other son, Noah, and be Evan's caregiver during the daytime hours; she, too, needs her sleep. We knew that Evan's night nurse would call us if needed and so, unbelievably, we headed off to bed. It's the way we must live in order to survive.

I didn't sleep very well that night but, when I awoke the next morning, relief that I hadn't gotten "the dreaded call" from the nurse flooded over me.

Penni was already downstairs in Evan's home ICU, helping the nurse give morning meds. Their voices seemed upbeat and the medical alarms were silent, so even though Evan was obviously still very ill, it seemed as though he would make it though another day. The smooth sound of the ventilator pulsing away comforted me. I headed off to the kitchen.

Pushing used syringes out of the way, I began to get Noah's breakfast ready. "Noah," I yelled, "it's going to have to be frozen waffles again."

"Fine. Could you cut them up like Mom does?"

It had turned out to be just another morning after all. My silent prayer from the night before – "Oh Lord, please heal Evan's heart and lungs and help him pull through this night" – had been answered.

As Noah happily ate his waffles, I walked back to Evan's room and overheard Penni telling the nurse that her prayer from the night before had been: "Dear Lord, please don't let my baby suffer anymore. Take him and comfort him in your loving arms."

I couldn't believe what I'd just heard. I stood, stunned, in the doorway. I wanted to blurt out, "Why would you pray that?!" but I bit my tongue and decided to leave for work instead. Before leaving, I peeked in again on Evan and, through the tangle of tubes and wires, I saw the one "normal thing" attached to my son – his little blanket, made of a soft cuddly material with a head of a bunny. I kissed him on the forehead.

"I won't be far from the house today, so don't hesitate to call if you have problems with Evan," I told Penni and the day nurse, who was just arriving.

As I drove my truck to the first job site of the day, I puzzled over the radically different prayers that Penni and I had uttered in the midst of our darkest hour. In fact, all that week, I thought and prayed and soul-searched about it. Finally, I did come to see her point. What I viewed as "giving up," she saw as "giving back"…giving Evan back to heaven.

And even though I can see her point, there's a part of me that just isn't ready to let him go – even to heaven. I think about all the father-son moments that we'll never experience together. I will never teach him to drive a stick shift. I'll never witness him walk across a stage holding his high school diploma. I'll never watch with pride as he becomes a dad himself.

And I wonder how I, myself, am doing in this business of fatherhood. Many times, I feel pathetic that I can't make enough money to give my family everything they need. I can't even afford to buy a cemetery plot. There's an understood responsibility that I – as husband and father and provider – should be able to take charge of the situation and make everything better. But I can't. I try, but I always fall short.

From time to time, social workers come out to the house. They counsel Penni about the stress and strain of parenting a terminally ill child. They talk with Noah about what it's like to have a sick little brother. I'm not sure why they don't approach me as well. I've learned that for me – and for other dads I've talked to – it's difficult to get help, support, and comfort.

You can ask a minister, and he'll offer to pray for you. You can ask a doctor, and he might write you a prescription. You can ask a friend, but he'll end up crying more than you. The closest I've come to finding someone who truly understands is my own dad. He has a big stake in all this too; after all, Evan is his grandchild. He knows that he'll never teach Evan to fish or take Evan to his first baseball game. As Evan's grandfather, he gets it.

And yet, I'm still alone in many ways. I feel that it's up to me to hold it all together – the family, the marriage, the finances, the future. After five years of life with Evan, we've adjusted to the daily routines, the inevitability of his condition, and the reality that life must go on. Even on a night when he could slip from this life to the next, we can't afford to stay up with him. This harsh truth has become normal to us. Living life with a dying child who is, for now, still alive has become normal. The scariest thing of all is wondering what's going to happen when he dies. Will life be better? Will life be worse? What will "normal" look like then?

Picture a band of soldiers, camped behind enemy lines on the night before a big battle. The soldiers are playing cards, cracking jokes with their buddies, and acting like everything is fine. But inside, every man on the field knows that in tomorrow's battle, he'll face death. In fact, he knows that at any moment, the camp could be ambushed, and everything would change in an instant. But on the eve of disaster, a little normalcy, a little laughter, a little denial helps you get through it, helps you survive. That's what it's like to live at our house.

In our house, Penni and I don't always see eye to eye when it comes to Evan. But at the end of the day, we agree on the most important thing. It was best said one evening around a dinner table at a formal occasion. A distinguished older gentleman leaned over and softly asked Penni, "If you could go back, knowing what you know now, what would you change?"

She took a deep breath and said, "You know, I wouldn't change a thing. Scott and I love Evan just the way he is. Yes, he's sick and has all kinds of problems, but he's our son, and he's taught us so much about life and has given us joy that few people know. We prayed before Evan's birth for the Lord to give us a healthy child, but God had a bigger plan for us. He gave us a son who loves completely and is loved by many."

No one at that table had a dry eye. Not even me.

Scott (Evan's dad)