Losing My Grip
Now that Nolan had a successful chest closure, all we had to do was continue to get him off the meds and then get that breathing tube out. On one hand, it felt like the hard part was over, but in reality there was still a lot left to do. Nolan was doing well, though: he’d open his eyes and look around a little bit and some of the meds were going away. We all kept doing our routine of juggling kids and work to go spend time with Nolan. It was exhausting but necessary: I wasn’t gonna miss a single day with Nolan. Suddenly, though, a weird thing happened to me. I started to lose my grip.
I don’t know why, and it wasn’t tied to one particular event or circumstance. It’s just like I woke up one day and felt like I was completely unraveling. I would fell really bummed out, and even though Nolan was showing slow progress, it didn’t feel so great to me. I felt completely disinterested in just about everything, kind of like I was walking in quicksand or some crazy fog. The Children’s Hospital is attached to the main hospital here, so you have to pass by the main hospital to get to the entrance to Levine Children’s. And day after day I’d see happy parents trying to figure out their car seats so they can bring their newborn babies home. And I wasn’t happy for them, I was jealous. I just wanted Nolan to be home already so we can be home. The worst part was usually I would go and sit with Nolan and always pray for him. This time I found myself sitting next to his little bed and asking God just to help me get through it all. I felt like somehow it was my fault things were progressing so slow, and it was my fault that I couldn’t spend as much time with Nolan or with my other two boys. Then I’d go to work and feel like I couldn’t do anything right. Ugh, what a mess I was.
One day at work I decided to chat with one of our chaplains, whichever one happened to be at the office at the time. This time it was Carl. I explained things to him and he listened and just kind of nodded and said “You know, maybe you should try taking some time and write down something every day that you’re thankful for. That could help put things into perspective.” That’s all. No fiery scripture-quoting, no organ, no laying on of hands. So I did just that: I went to my office and grabbed a scrap of paper and began to write down a few things I was thankful for: my wife, my family, my home, working cars, a good hospital, food, running water, the ability to get out of bed in the morning, the ability to breathe on my own….
And just like that I felt WAY better. Ok so it wasn’t so bad after all, I was just being super-hard on myself due to all the stress we were under. That night, the visit – and future visits – with Nolan went much better. The drive to the hospital didn’t bother me, the parents loading up fresh newborns didn’t bother me, and I kept praying for Nolan and calling him my hero.
The HLHS journey is a very long one with lots of good moments and lots of bumps too. You can’t ever compare an HLHS baby and a healthy baby side-by-side, you always have to put things in perspective. Just remember: if your little one is doing well, and you’re doing well, then all is good. Everything else is a bonus.