I never wanted kids. The life I imagined was traveling all over the world with no real home. Yet a little over 9 years ago, I found myself in a hospital room with a little baby boy on the way and a home to bring him, well back home to. Life is funny. I was happy to be welcoming this little guy into the world, but I was not ready and had absolutely no idea what I was doing or going to do. He didn’t care, and showed up anyways. So selfish that kid. Didn’t he know that I was going full freak out over here? When he came out, he had a cone head. I was playing it cool, but in my head I was thinking what in the hell is wrong with this baby? The nurse carried the baby over to a side table to work on him. She sensed my concern over my little cone headed baby, and assured me that it was normal and his head would be fine. Did I say anything? No, I did not thank you very much. After the dust had settled, the nurse asked if I wanted to keep him in the room with me or let him spend the night in the nursery. NURSERY! By now, this little guy had a government name and everything… Joshua.
While Joshua was in the nursery and everyone was sleeping but me, I typed into my phone… how to be a dad? Desperate, I was. Helpful, it was not. The next day he came home with his old man. I learned on the job, and found it to be rather easy. I had trouble sleeping, so overnight feedings weren’t a problem. I enjoyed having someone to spend time with during the lonely nights. I’d rock him to sleep, sing to him, check to make sure he was breathing, and check again to make sure he was breathing. I couldn’t sleep, and everything my friends were complaining about didn’t seem like a big deal. Why were they so miserable and tired looking? It was easy for me.
Time passes, as it does. Birthdays, holidays, they pass in a blink of an eye. Something isn’t right though. I don’t know what, but something isn’t right. Time is flying, but I’m slowing down. I can’t sleep, which made me the perfect dad for the late night feedings, hugs at 3 am from a bad dream, and the times when he’s not feeling so good. This something though isn’t working out so well during the day, when I find myself getting tired easier and easier. I’m also a step slower and my hand is acting funny. Whatever, I’m epileptic. It must be from the seizure medications or the seizures messing with me somehow. No big deal.
More time passes, as it does. I don’t feel much for anyone or anything anymore. This kid that had been my everything has become a stranger to me. Everyone has. I feel nothing. I’m falling more and more, and my hand has gotten so bad that I can’t manscape or button up a shirt. I later learn that my family noticed every bit of this as did my doctor during a routine epilepsy appointment. That appointment was one door closing and another one opening to a new life with Parkinson’s. I wasn’t just a dad anymore, I was a YOPDad. I had been the whole time and never knew it. Parkinson’s can be a curse, but I was awake telling him that monsters aren’t real and holding his hand when he wasn’t feeling good. I was awake to sing him Storm by Lifehouse when he needed help getting back to sleep. Parkinson’s helped me be a dad.
Even more time passes, as it does. I now have a 9 year old boy who thinks he’s going to make a living playing video games and get a girlfriend by offering to show her his comic book collection. I’ve never been more convinced that he’s never moving out and he’s going to have his wife move into his room on the top bunk of his bunk bed. He says he’s going to own a Lamborghini one day which means he’s either going to be rich or I’m going to have a Lamborghini in my garage and a 35 year old sleeping in a bunk bed under my roof. I still have trouble feeling, but it isn’t as bad with therapy and medication. I do look at my little ParkySon with a blank stare, like he’s a stranger. My memory comes and goes, but I try to hold onto our nights chasing away monsters and singing songs. It’s how I know I love him and it’s what gets me though being a dad. I give him a ton of hugs.
I didn’t ask for Parkinson’s and neither did he, but I’m his dad and he’s a kid. You only get one childhood and I’m doing my best to keep Parkinson’s out of his life. It doesn’t always happen. I get anxious and need to hide, but he has to tell me about Pokemon and Fortnite. I have to beg him to stop and then he’s reminded that I have Parkinson’s. Kids are resilient and he forgets. I do what I can to make him forget. I don’t know what the future will hold, but today I dressed him up for baseball pictures, laughed with him, and gave him hugs. Being a parent with Parkinson’s isn’t easy, but being a parent isn’t easy with or without it. Having a dad with Parkinson’s has been a blessing. He’s learned about compassion. He’s learned about adversity and how to overcome it. Being a parent with a young child with Parkinson’s can be lonely. I don’t have anyone I can sit down with a talk to about it, or even just sit down and not talk about it. It is tough, but I’m going to continue to do what I can to be the best dad I can be until one day it’s his turn to sit in a hospital room typing into his phone… how to be a dad?