Signs and wonders

Six or Eight weeks ago, my son was at his urologist for a routine set of tests to check how his mitrofanoff was functioning. For years his bladder never completely drained because of nerve damage. To address the issue, he started cathing years ago. But as my son put it, “my urethra is like a […]

Open Letter to Children’s National Medical Center

To Children’s National Medical Center: Below is a physician’s review I posted to Angie’s List. Since your survey was eliciting feedback, I thought you should know. Dr. Yewande Johnson met with our family shortly before my son was scheduled to go into the OR for his first of two surgeries in one week. She took […]

Hilarious

When my son is in the hospital, my wife and I take shifts staying overnight with him. That way there is always one coherent parent present when Drs and nurses come by. In this last 6 day stint, Monday was one of my nights off. When I got home I was so keyed up, I […]

Kinda Prayin’

I must preface my remarks today with an observation. Love has become an almost meaningless word to me. It is so ubiquitous in our lexicon that it can refer to hamburgers, sex or a lifelong commitment. So I am going to stop using it. For today’s entry the word I will use to convey my […]

Lament of a Tired Soul

I have a favorite poem. It is the “Love Song of J. Alfred Prufrock” by T. S. Eliot. It is a poem of a tired soul. The first stanza in particular resonates with me today. Let us go then, you and I, When the evening is spread out against the sky Like a patient etherized […]

The Black Hole

Deep inside of me there is a black hole. It is a malevolent mass of pure evil. Were it to be freed, I might be capable of doing unthinkable things. Usually, it is under wraps. It is buried so deeply in my psyche, that under normal circumstances, I cannot even access it. But under prolonged […]

The Winter of My Discontent

VACTERL occasionally gives you a little break. Though you may have an onerous lists of tasks required to keep your child happy and healthy, you get into an offbeat rhythm that mimics normal life. You find a place of serenity and you think that you have beaten back the deadly predators. But really you are […]

Legacy Code

I had my Imagine meeting this morning. It was our second to the last meeting. Not sure what comes next, but I’m open to possibilities. We are reading the book Naked Spirituality by Brian McLaren. I had procrastinated all week and as of noon yesterday, I had not read the second half of the book […]

Imagine, part 7

Thud! I start this posting with a quote from Pink Floyd’s The Wall. It is written from the perspective of a husband to his wife. But I use it here to describe the next phase of my faith journey. Day after day, love turns grey Like the skin of a dying man. Night after night, […]

Imagine, part 6

Crash! I preface this post with a couple of thoughts. It is impossible for me to put into words how much I love my son. He inspires me daily. Let me be clear I do not in any way, shape or form blame him for what happened to me. What follows is purely the result […]