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 […]

Dream

Last night I dreamt that I was in a dinner with my wife’s grandparents. It was just the three of us. Her grandfather and I were on one side of a booth, her grandmother on the other. There was a TV overhead. They were playing a news story about bullying disabled children. Jenn’s […]

I Can Do All Things (Phil four thirteen)

Go to church long enough and the same topics and scriptures are repeated. If they use the lectionary it is roughly every three years or so. At most churches it is somewhere between 3 and 5 years…except around Christmas and Easter, they are repeated annually. Rarely do you hear a good sermon about Jael driving […]

Memories of Thanksgivings Past

I am sitting in my darkened living room in a post turkey comma. The sounds of family playing in the other room remind me that all is right with the world. 10 years ago was probably the most memorable Thanksgiving of my life. Ethan had been scheduled for his second surgery in early November. But […]

Center of the Universe

This is a belated entry. It actually took place a couple of weeks ago. I struggle as a parent of a child with a disability. When you parent a child with special needs, you are in somewhat uncharted territory, even more so when your child’s disability is rare. You can’t just run down to Target […]

Nothing Moves…This Week

This week was a roller coaster ride. Thankfully, it is over. Sunday the world is fresh again. “Gray Day….Everything is gray. I watch. But nothing moves today.”…Dr. Seuss Monday was one of those days that I felt wholly inadequate as a parent. Ethan has struggled with his whole life with urinary continence. What most children […]

Clinical

Today is clinic day. Once or twice a year we go to Childrens National medical center to the spina-bifida clinic to see all of Ethan’s specialists at once. Ethan does not have spina-bifida per say, but VACTERL has a lot of the same issues.In addition to meeting with the doctors, he has a number of […]

Entertainment?

I was watching Parenthood the other night. I love the show, but sometimes hits a little too close to home. One of the couples has a child with Asperger’s. They are expecting another child and the scene took place at the OBGYN’s office. The couple was terrified that their child might be a son, increasing […]

I am an association; but one day I hope to be a syndrome

The last moments of my vacation are unwinding. Tomorrow it is back to the salt mine. It has been a crazy week and a half. One week of Disney and a weekend of VACTERL Association conference. Both events were firsts. Disney was OK, but I think the VACTERL Conference will stay with me much longer. […]