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 Music of Sorrow

Music is very important to me. I am not a musician and I cannot create music of my own. But when I listen, I really listen. I sometimes think of music as an old testament alter with smoke wafting into the air. The prevailing winds determine the patterns and intensity of the listening experience. When […]

The Long Slog

Most days, VACTERL is just a pain in the ass. It’s just time consuming and it wastes your child’s time, your time and family time. There is a checklist of tasks that you must worry about every day, which normal families take for granted. But over time any set of tasks can become routine to […]

The Swinger

When my son was first born, I was on the cusp of going into the ministry. Because I was quasi clergy, I felt that I had to put a positive spin on everything. I said obnoxious things like, “thank God this happened to us. We have the resources and a strong relationship. We can deal […]

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 […]

UltraPyrus

To say that I am a pessimist would be an understatement. Many an optimist has tried to change me, but I am just wired to think about the worst case scenario. In my vocation, it is my job to pick every little thing apart. But when you deal with chronic illness, you cannot always focus […]