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:

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.

The School Journey Begins

Hey Friends! I know it’s been a long while but I felt like it was good to let the summer just kinda come and go without worrying about blogging…looks like it spilled into the fall. Whoops! Sorry about that. Anyhow, it was a good summer and the BIG thing coming up for both Nolan and Grant was…THE START OF KINDERGARTEN!

Nolan did really well finishing up pre-k at one of the local public schools: he had an amazing teacher and assistant and we’re so thankful for their loving patience with him and their ability to get the best out of Nolan. His obsession with the ABC’s has made him an amazingly-good reader, but there’s still a lot of things he needs to work on, mainly writing and cutting. More importantly, we had to meet with his new school (our actual neighborhood school) to review his IEP plan in regards to things like classroom socialization, physical therapy, occupational therapy, etc. The school was very gracious and accommodating and they even had a kindergarten teacher go to his pre-k class to hang out with him and evaluate him in action. She seemed to love Nolan (who wouldn’t?) and hoped she’d be his teacher. They planned to carry on all of the needed therapies there at the school. Nolan and Grant both did their kindergarten assessments in July and then it was just a matter of shopping for school supplies, school clothes, and all that fun stuff.

While Nolan has shown improved eating with his new feeding team, he’s still on the g-tube and we had to go over some feeding stuff with his school, so we requested a meeting to develop a 504 Plan. Again, the school was amazing and scheduled a meeting the Friday before school was supposed to start. His teacher (who was the one who evaluated him, yay!), the Assistant Principal, the School Nurse, and others were present and we were able to tell them why it’s so important for Nolan to remain hydrated AND why it’s important for him to get a good number of calories in his day. We talked about his heart and everything he’s been through and told them they’re a big part in helping him succeed at eating by mouth. We also talked about using the g-tube if he wasn’t drinking well and warned about the g-tube being accidentally pulled out. The plan was if he didn’t drink a certain amount by lunch then the rest in his cup would be given via the g-tube and the school nurse would show the teacher how to use it. I think that stressed out his teacher A LOT, and we did our best to calm her down and give her the confidence that all would be well…not to mention the school is literally across the street from our neighborhood, so my wife is super close if they need her. The plan was in place and then we spent the weekend prepping for the big first day!

I’m sure a lot of you reading this have either been nervous about the start of school with your heart kid or are getting nervous about school coming soon. Trust me, I was there too. I was always wondering whether this was the right school for him, whether he’d be safe, whether he’d behave, whether he’d fit in, etc., etc., etc. But the reality is this: we did everything we could have possibly done up to that point – we discussed all the issues with his school, including the IEP and 504 plan. We talked to his teacher and principal and made ourselves available for whatever. The next logical step was to walk up to the school and hand our little boy off to his teacher…

So the day finally came. Our little Nolan; the one who survived 3 open-heart surgeries, the one who required multiple attempts at chest closure, the one who endured so much therapy just to sit, stand and walk…Nolan had his first day of kindergarten:

I mean look at this kid! I was so proud of him AND Grant. This was their time to shine and to kick off an amazing school year. They had a step-down week for their first week, so they basically only went for one day, but it was an exciting day. We drove to the school, parked, and walked our boys in to their separate (for the sake of their poor teachers lol) classes. I gave Nolan a big hug, told him I was proud of him, and told him to have lots of fun. And then we walked away.

At first I was nervous, worried, excited, anxious, all of that; but it eventually went away. I took the day off from work, and all the kids were at school and everything was quiet…Awesome! We went out for a little bit and just enjoyed some time together…until the school called.

After a brief second of dread, we found out it wasn’t an emergency, it was just that Nolan was being stubborn (imagine that) about drinking his chocolate milk and the teacher didn’t know how to use the g-tube yet and could we help. No problem! So we drove back to the school. Honestly the big worry was that Nolan would see us and wouldn’t want to stay in school. He’s kinda a homebody and we thought for sure that’s what he would do. So we got to the school, got visitor badges, and went to his classroom…and there was Nolan, happily sitting at his spot at the table painting with his favorite color, red. He looked up at us and rather nonchalantly said, “Hi Mom and Dad, look I’m painting.” And we walked up and asked him if he’s ok and all of those thousand questions and he basically acted like we weren’t even there haha that little troll. We tubed him the rest of his milk, and gave him a kiss and he was essentially like “Go away, I’ve got this.” and as we walked out of the class we could hear him singing his phonics song with his class, “The snake is in the grass, the snake is in the grass, ssss ssss, the snake is in the grass.” Everything was ok, and everything was going to be ok.

School years are a marathon, I know it, and there will be easy weeks and difficult ones; but I think Nolan is in the right place for him – his teacher is super sweet and kind and he loves learning his letters and numbers. I know with our heart warriors it’s never as simple as sending them off to school – there’s so much to plan for, so much to worry about, and so much to explain. One that’s all done, though, keep an eye out – your kid will definitely surprise you! Here’s to a great year, kiddo.