An open letter to dads of terminally ill children

Dear Dad

Welcome to the club. In your worst nightmare, this club isn’t a club you’d want to join.

You are a no deadbeat dad.

You are a great dad.

You’ve been there, and you plan on being there. At all the ball games. All the extra curricular events. Every major event.

Except now you don’t know if there will be any ball games.

Your son or daughter was just diagnosed with a horrible disease. They are going to die an untimely death. Months, years, the time you have varies. No father should die before his children.

And you lay awake at night, suffocating in your own grief. You have to be strong for your family but there are times you feel like you can’t even breathe.

More often than you’ll admit it.

When dads are asked what they want their kids to be “when they grow up,” you listen to their dreams of professional sports, of successful world-changing careers.

When they ask you: “What do you want Tommy to be when he grows up?”

The answer sometimes slips between the mental barriers.

“Alive.”

You will go through cycles in this storm. There will be many “eyes” in the hurricane. Times where you will have peace, and joy. Laughter will rarely reach the corner of your eyes.

You’ll get tired of answering the question “How is Johnny? How are you?”

You’ll develop your own pat answers to deflect, because they want to know…

But they don’t. Not really. Because its your weight to carry, not theirs.

You’ll watch the bills add up and the future options diminish. You’ll have no idea how to make it all work, but you’ll have to pretend to have it all together. For them.

You are a dad. And sometimes you’ll just want the nightmare to end. For a moment. You want to tag out, tap out, ride the bench for just a few minutes.

But you can’t. And you won’t. You’ll stand and live and love and die before you’ll quit.

Dad, you aren’t alone. Sure, you are alone right now. But you are part of a brotherhood. A brotherhood of the strong.

A brotherhood of the answerless but faithful.

A brotherhood of broken but not defeated.

You’ll live and love like no one else.

You’ll come to understand, to know, to believe, that quality of life is not measured in the days lived, but in the amount of living in each day.

You’ll know that you wouldn’t trade the pain for anything, because the pain means that you have your child. And that little person is worth much more than the emotional nightmare you are going through. Far more.

Really, they are the one who is suffering. And they do so much better than us.

So when you are out walking, or are hiding in your car, or closet, or wherever it is you go to cry, and weep, and wail, and be alone, to allow yourself to down for a few minutes in your grief just remember you aren’t alone. There are lots of us.

Welcome to the brotherhood.