Searching for meaning in all the wrong places
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 […]
Read More The Long SlogVACTERL 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 […]
Read More The Winter of My DiscontentCrash! 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 […]
Read More Imagine, part 6Last 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 […]
Read More DreamGo 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 […]
Read More I Can Do All Things (Phil four thirteen)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 […]
Read More Memories of Thanksgivings PastNews flash…I bitch a lot about my life online. But my blog is an outlet. I am less cranky in real life. But on this day of Thanksgiving, I would be remiss were I to ignore the blessings I have in this life. I am grateful for the usual suspects family, friends etc… But I […]
Read More Just in the Nick of TimeThis 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 […]
Read More Nothing Moves…This WeekToday 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 […]
Read More ClinicalThe 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. […]
Read More I am an association; but one day I hope to be a syndrome