Look Up

So in late September/early October I went to Chicago for a work conference. I brought my staff with me and I think everyone was looking forward to it. I’d never been to Chicago before, so if I had any free time during the conference, I was gonna spend it exploring the city! Of course, I drank lots and lots of coffee and ate some amazing food. I got to see some beautiful art and learn about the city’s history. I visited the Cloud Gate and took the necessary selfie with it:

CP Chicago

It was such a cool city. But here’s the rub: I almost missed a lot of what made it really cool. See, the way I got around the city was either through public transportation or my own two feet. So off I went, armed with my Transit App and the maps on my phone. I was pretty proud of myself getting off one train, then getting on a bus, and making it to one place or another, whether it was the Museum of Mexican Art or to have some amazing Puerto Rican food in Humboldt Park. But I was walking towards dinner one evening after walking around Wrigley Field when it hit me – I’m walking through this city looking down at the map but I’m missing the stuff I’m passing by.

Now don’t get me wrong, this isn’t a post about putting your phone down. Not at all. I had my phone out because I didn’t wanna get lost in a strange city and end up paying a fortune to uber myself out of it. There was nothing wrong with using my map app; rather, I was on a 1.5 mile walk, basically in a straight line! I couldn’t get lost if I tried! So I decided to just hold the phone down at my side and look around a little bit. And then I saw it: a cool mural here, a fun store over there, and hey look at that cool building. I started to notice the details of what makes Chicago – in my opinion – a really cool city. It’s got lots of character in the architecture, the culture, and the people. And if I stayed glued to my map, I would’ve definitely arrived at my destination, but I would’ve missed what was on the way.

So what does this have to do with being a Heart Dad? Hear me out:

How often do we overlook the cool details on this journey? How often do we let this beast that is CHD consume our focus to the point that we miss small victories?

Here’s a recent example: the other day at bedtime Nolan asked me for a drink. At first I thought, “Stall tactic!” of course. So I went downstairs and, grumbling, grabbed his cup with chocolate milk and brought it up to him. I sat there beside his bed as he held the cup in both his little hands and drank all the milk through a straw. And it then occurred to me, much like it did on the streets of Chicago: yo, this kid – the one who at one point couldn’t move his hands or arms, the one who ate or drank nothing by mouth – is sitting here in his bed, holding his cup and DRINKING! What an incredible reminder of the amazing things he’s been through, about how – at this moment in time – he is winning big time! It made me smile outside and I inside I was downright glowing, And to think I could’ve missed it.

And you guys, I also believe it can be easy to merely be focused on the far-away things, like our kids’ CHD itself. I’m not saying don’t ever think about it; frankly that’s impossible. I’m saying don’t make that the only place you choose to look. Check it out, I’ve had plenty of times where my brain is like “OHMYGODWHATIFHENEEDSATRANSPLANTICAN’TAFFORDIT!” And I get it, we’re only human, and we have this incredibly beautiful – and fragile – life to care for. But please, please, please don’t miss the smiles, the laughs, the funny stories, the hand-holding, the head lean on your shoulder, the bedtime stories, the bathtimes, the singing and dancing, the eating, the playing, the running, and the jumping. Your child has been through so much, don’t let the destination be the only thing you watch; there are so many incredible things to see on the journey.

So today, this week, this month, take some time and really look at what cool things you find on your journey. Remember to celebrate those moments that previously may not have been possible. I don’t know what your situation is, but I know it’s not easy, and I’m hoping that this little exercise helps you find some joy, some peace, and some hope along your way.

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on October 31, 2018, in life and tagged , , , , . Bookmark the permalink. Leave a comment.

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