Letting Go of the Manual

Oh man. It’s May already. In less than 20 days the moving truck will be here and we’ll be on our way to Pennsylvania.

I don’t know if I’m ready for this.

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20 years ago (wow, how is that possible?) Karyn, her sister Jenny, and I took a road trip to Chicago. We were thinking about moving there to get our theater careers off the ground. We drove to Indiana Dunes National Park, set up a tent, then rode the commuter train into downtown Chicago to scope it out. 

We walked around the Loop, strolled down Michigan Avenue, and rode the Brown Line north to Southpointe. (But we never crossed through the turnstiles because we weren’t sure what kind of neighborhood it was.) We rode back down to the Loop, walked around some more, then caught the train back to Indiana. We did this for a couple of days, never really venturing out of the Loop and thinking that it represented all of Chicago.

When we drove home we were pretty sure we did not want to live in Chicago.

I can’t speak for the ladies, but I was scared. It was a big city, we didn’t have any friends there, and we didn’t have jobs or a place to live. And getting any of those things seemed so overwhelming. 

These were the pre-Google, pre-Facebooks days of the internet, so it wasn’t like there was a Buzzfeed article that listed “12 Reasons Andersonville Blows Our Skirt Up” to help us out.

I remember thinking at the time that we never went over that sort of thing in school. There were no classes on how to navigate a new city. No lessons on how to spot a shady landlord. How to prepare for an interview. Basically, there was no Manual on how to be an adult.

I really wanted a Manual.

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It’s part of my perfectionist tendency that when I set out to do something I want to do it well right from the start. I don’t want to fail. I don’t want to look stupid. I don’t want to “try, try again.” I want to do it the way it’s meant to be done right out of the gate. So if I come across something I’m unfamiliar with I bury myself in how-to books and videos, while putting off doing the thing as long as possible. 

When I first started writing screenplays I was stymied by the formatting. So I bought a book. And another. And another. And I quickly learned that the formatting was the easy part, it was the writing something special that was hard. So I bought more books, and whenever I’d get stuck writing I’d turn to one of the books. 

“What’s supposed to be happening here? Is page 70 where the “dark night of the soul” goes? Did I create enough setups and payoffs? Is there enough white space on each page?”

I was trying to follow a preset recipe to create something that had never been created before. And guess what? It didn’t work. It wasn’t until I stopped trying to fit my stories into a mold that I felt like I finally got it.

The same goes for being a parent.

When we had Dashiell I really wanted a Manual. I like to joke that when the midwives left our apartment the night he was born it wouldn’t have been any more strange for the UPS driver to have handed us a new baby and then walk off. Being an expecting parent is waaaay different than being an actual parent.

Sure, there are lots of parenting books, but there is no consensus among them. You’ll find disciples of many different schools of thought when it comes to raising children, and most of them completely contradict one another.

Why isn’t there One All Encompassing Manual on Parenting? I mean, for as long as people have been birthing and raising children you’d think we could agree on the best way to do it by now.

And then came Rumi.

Just when we were starting to feel like we had a handle on the parenting gig her diagnosis of Down syndrome threw us back into the unknown. The deep, dark, scary unknown. 

While there aren’t as many books on Down syndrome as there are screenwriting, it didn’t stop us from getting them. (Or people giving them to us.) But all of them are written from the perspective of one parent or family or individual with Ds. That’s not to say these books aren’t helpful and inspiring and reassuring, because they are all of those things.

It’s just that none of them told us how we should raise a child with Down syndrome day to day. What were the steps? What should we be doing? What’s the recipe?

We wanted a Manual. An instruction booklet we could reference any time we had a question about anything. I don’t know how many times during those first three months or so we asked “Is this normal or is this the Down syndrome?”

“Is she eating enough? Is she gaining weight? How many days without a poopy diaper before we should be concerned?” (2-3 weeks if they’re breastfeeding. I know, I was shocked too. Though kiddos with Ds can have bowel issues because of their low muscle tone.)

It’s only with hindsight that I’m able to look at those moments and see how typical they actually were. But it’s hard to know that when you’re eyeballs deep with a new baby who has a diagnosis hanging over her head. Especially when you’re still trying to come to terms with it.

It’s a weird balancing act, because on the one hand you feel like you should be excited that you have a new baby, but on the other you’re deeply sad that it’s not the baby you expected and you’re worried they’re somehow more fragile than any other baby.

We have these ideas of what “normal” looks like and when a doctor tells you that your baby won’t be that it’s devastating. You need time to work through that, which can be challenging when you’re also busy taking care of a infant. (I’ll dig deeper into this in another post because one paragraph is not enough to cover this aspect of the journey.)

Every baby is different, Down syndrome or not. And you just have to trust yourself that you’re doing the right thing. But that doesn’t mean you need to do it all alone. While there isn’t a Manual there are plenty of people who are willing to listen and offer support and advice. It doesn’t mean you have to take their advice, but sometimes just talking to someone can help alleviate your anxiety.

Seriously, if anyone reading this ever needs to chat about their kid’s issues (or anything really) I’m always happy to listen. I’m definitely not an expert, but I’ve already been through the Gauntlet of Early Fears, and I’m not afraid to ask my wife if I don’t know the answer. (Though I might not give her credit to make myself seem smarter.)

Rumi is only three so I know there are a lot more dragons waiting for us down the road. We’ll be wading into the waters of school later this fall, and we don’t even know what school district we’re going to be living in at that point. Hell, I don’t even know what I’m going to be doing for work by then.

Our little family is moving across the country and starting over. To say I’m anxious would be putting it mildly. I would love to have a Manual that walks me through all this. But I also understand that these experiences are what make life interesting.

So, while I don’t enjoy looking like a clueless boob (because of the aforementioned perfectionist tendencies) I know that I need to grit my teeth and be all right be fumbling around at first. I also need to take my own advice and be willing to ask other people for help. Because I want my family to thrive in our new home, and becoming part of a friendly community will help make this transition a lot easier.

So if you live in the Greater Pittsburgh Area I’m all ears when it comes to great communities, awesome schools that are inclusive to kids with disabilities, and fun stuff for families this summer that will help Dashiell realize moving away from the only home he’s ever known isn’t the worst idea his parents ever had.

Thanks.