The Daddy Diary 2: A CHARGE to Keep I Have

Anytime you buy a lottery ticket, you can see your chances. When you look at the odds, there is always a “one in” listed before a number that contains the same number of digits as my current Body Mass Index after eating nothing but Snickers bars and crappy pizza slices from the hospital cafeteria for three weeks. And you think that “one” can be you even after you run the numbers and realize that your odds of winning are roughly the same as being struck by lightning twice during a shark attack while watching the SMU football team win the National Championship.

Everyone who is a parent or is even thinking about being a parent has seen the numbers – 1 in 10,000 chance of this, 1 in 100,000 chance of that. You never think too much about it because the odds are so small. You figure the “one” is a family in some remote area of a third-world country because you don’t know anyone with this defect or disease. That “one” never comes up – until it does. Somebody has to be that one.

For many people, there is a point in their life when they hear that their life isn’t going to be normal anymore. It might be the day they hear that their cancer is inoperable. It might be the day they find out that they have ALS. For my dad, it was the day he was diagnosed with Parkinson’s. Some people get this message late in life, some get it early. My little girl got the message on day twelve.

We found out that Audrey’s heart defect is a symptom of a genetic defect called CHARGE syndrome. Don’t Google it. It’s not a fun read. CHARGE is an acronym for the common symptoms with this defect, and she’s already been diagnosed with four of them. I look at her and think, “How can something look so perfect on the outside, yet be so damaged on the inside?” Her first heart surgery is scheduled for next Wednesday. We already have three surgeries on her docket and a long road ahead before we can even define what “normal” means for us.

Winning the lottery doesn’t always work out well. One study shows that 70% of lottery winners eventually go bankrupt. I’m guessing no new parent wants or asks for a disabled child. It’s not the lottery that anybody thinks they would want to win, but I think this lottery will work out better than it seems. We don’t know where this road will lead, but I’m happy to drive the whole way. We know this journey is going to be more difficult than we can possibly imagine, but every time I look at her sweet face, I think the same thing –

I’d pick these same six numbers again.