Happy Birthday, Audrey

Four years ago, I sat in a pub with a few friends. I reached for my freshly (and perfectly) poured Guinness when Michelle called. I put down my pint of God-given nectar and answered the phone.

“Hey, my water just broke. You need to come home.”

I reached for my wallet to pay for a beer that I would never get to drink when my friends said,

“What the hell are you doing? We’ve got your tab. Go.”

I was so anxious and scared as I drove home because I knew that Audrey had a heart defect and would have to have open heart surgery after she was born. I thought at that time that she would have the surgery and we would head home after a couple of weeks for her to recover. I had no idea what we were in for. What I thought would be merely a lifelong relationship with a cardiologist and some hearing aids turned into fourteen surgeries, endless therapy sessions, and now relationships with an endocrinologist and nephrologist. But I also didn’t know that she would be the happiest little kid to ever grace this planet.

I wrote the following words while we were in the hospital after she was born. I’m reposting them to let her know that this journey was so much harder than I thought it would be at that time.

And I wouldn’t change a word.

Happy Birthday, Baby Girl!

The Winning Ticket

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 Body Mass Index after eating nothing but Snickers bars and crappy pizza slices from the hospital cafeteria for three months.  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 taking a picture of the Loch Ness Monster.

A kid is like a lottery ticket, just a random combination of numbers, and you never know what you are going to get. 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 1,000,000 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.

And that “one” is not a number.  It is a life.  It is a baby.  It is a person.  It is an entire family dealing with a reality unlike everyone else whose number did not get picked.

For many people, there is a point in their life when they hear that their life is not 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.

CHARGE Syndrome, or any birth defect for that matter, is not something any parent would wish for their child.  No parent wants to see their child struggle.  I look at little Audrey and think, “How can something look so perfect on the outside, yet be so damaged on the inside?”  In the children’s hospital, the patients accumulate beads for various events – each night they spend in the hospital, each test they run, each surgery that is done, etc.  Audrey has just about cornered the market on beads.  If these beads were actual currency, I could buy and sell Jeff Bezos ten times over.  She has been to hell and back, and we can’t even define what “normal” means for us yet.

I am guessing no new parent wants or asks for a disabled child.  It’s not the lottery that anybody thinks they would want to win.  We don’t know where this road will lead, but I am happy to drive the whole way.  We know this journey is going to be difficult, but we have no idea how difficult.  I can’t even imagine how hard and stressful this will be or how much we will struggle as a family. 

But no matter what happens, I want Audrey to know just one thing –

I would pick these same six numbers again.