Ok, I’ll Go There

There are issues in society that deserve a healthy, intellectual discussion. Religion. Politics. The designated hitter rule. Whether chili should be made with or without beans. Whether Van Halen was better with David Lee Roth or Sammy Hagar. I used to love a healthy debate, but now it seems now that society demands that the first move in any debate is to choose a position as far to the edge of either pole as you can go and then put that pole in a bear hug with both arms and never let go. And I hate that. Mainly because I really liked Van Halen with Sammy Hagar. I preferred David Lee Roth, but why do have to choose one? I mean, they were more energetic and fun with Diamond Dave, but they were probably a better band musically with Sammy. But I can’t say that because there is no room for nuance anymore.

With my blog, I’ve avoided polarizing or controversial topics for one reason – I don’t want to lose readers. To get a book published, a writer has to have a huge following. That’s the only thing you need. The writing can be complete crap, but if you have 50,000 readers you will get a book published. I get it. It’s a business and I have to play the game. I thought if I wrote something that could possibly offend someone, I might lose readers and any chance at a book deal. Well, screw it. I don’t have that many followers, and my odds of getting a book deal are about the same as Vladimir Putin winning the Nobel Peace Prize this year. So, if I lose all my readers because of my thoughts on the following topic, no hard feelings. I wish both of you nothing but the best.

The recent Supreme Court decision reminded me of a question I was asked after we learned about Audrey’s diagnosis. I addressed one of the nuances of this topic in my book. I’m not going to solve this problem or change anyone’s mind, and I don’t really want to do either. When you write a memoir, it has to be all or nothing, and this is a decision that every special needs parent has to deal with.

Here’s an excerpt from the book. Note: I wrote this a couple of years ago. As I’ve spent more time with Audrey, my thoughts haven’t changed, they’ve only strengthened.

Chapter: The Lottery

What’s been important in my understanding of myself and others is the fact that each one of us is so much more than any one thing. A sick child is much more than his or her sickness. A person with a disability is much, much more than a handicap. A pediatrician is more than a medical doctor. You are MUCH more than your job description or your age or your income or your output.

-Fred Rogers

After we had learned about Audrey’s condition, a few people asked me if we had known about CHARGE syndrome and the depth of Audrey’s defects before she was born, would we have gone ahead and had the baby.  Michelle and I both said yes, without question.  The political and moral implications of this topic are better covered in another book by another author.  But it is an important question about the complex minefield of parenthood.

I have heard about couples deciding not to have a baby after learning about a potential birth defect before the baby was born.  If somebody had come to me before Audrey was born and told me exactly what we would be facing I probably would have had some doubts about how well I would be able to handle it.  If anybody feels like they would not be able to handle raising a special needs child, trust me, they can.  Having a special needs child is stressful and will strain your emotional health and marriage.  It will be much harder than you can imagine, but it is also much better than you can imagine.  If someone decides that they just cannot deal with the struggle, no words of mine can help with that.  If they decide to terminate the pregnancy, I will most likely never agree with their decision. But you know what? It’s their decision, not mine. I’m not going to judge them or tell them what they should or shouldn’t do. It’s not my body or my family. I honestly don’t know what God thinks about abortion.  It isn’t mentioned in the Bible. If their actions are an abomination to God, I will let Him handle that.

I cannot be objective on this issue because I’ve had the chance to spend time with Audrey, and I do not want to imagine a life without her.  I haven’t conducted a scientific poll, but I would guess that anyone who decided to have the baby after much internal debate probably doesn’t regret going through with it.  It hurts my daddy heart to think that someone would not want Audrey because she is different and requires more care than a normal child.  She is the best-natured baby I have ever seen.  I have seen first-hand what she has had to endure (and is still enduring), yet her method of dealing with it is endless smiles and giggles.  She gets so excited every time Michelle or I enter her field of vision that she starts giggling and kicking with joy.  Despite the bad hand she was dealt, joy is her emotional steady state. 

When I was single, I had a solid third-grade understanding of love.  With Ella, I got a master’s degree.  With Audrey, I got a double doctorate in love and patience.  I have learned that loving something perfect is easy.  Ella was the perfect baby, and she was (and is) easy to love.  It is harder now that she is a toddler, but that does not make me love her any less.  Besides, where is it written that love is supposed to be easy?

It is hard when you wake up in the middle of the night almost every night because your baby is spitting up because she got too much air in her feeding tube.  I know that means one parent must vent the air from her stomach while the other parent changes Audrey’s pajamas and bed sheets.  I also know that means my next day is going to suck because if I wake up in the middle of the night, I’m rarely able to fall back asleep.  Resenting the person that just ruined your sleep would be the easy path.  But every time I walk into her room, she just looks up at me and smiles because daddy is here.  My heart melted the first time that happened, and it has melted every single time since then. 

I would ask anyone thinking about terminating a pregnancy because of a possible (or even certain) birth defect – why do you want to be a parent? Being a parent is going to make your life better than could have ever imagined, but it’s going to be harder than you could have ever imagined. I can tell you that every child is different, and they all came with their own unique set of challenges. Even the healthy kids.

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.

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.

(Audrey and her beads as of this writing)

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, but I am glad I won this lottery.  I have seen what the winning ticket looks like.  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.  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 one thing –

I would pick these same six numbers again.