Three years ago today, Jaxson got his name! He was three days old. We hadn’t had a chance to choose a name before Jax was born – I was only half-way through my pregnancy after all! When we finally decided on his name, everything felt real. For me, it was the point of no return. Jax was our son. We loved him. No matter what happened, we would always be a family.
This was also the first day we got to touch Jax. The nurse had to clean his bedding and she allowed us to lift him up while she changed the sheets. We were finally able to touch our son’s skin and feel his wiggles.
It was the best 30 seconds, ever. It was also the most terrifying.
The nurse warned us that Jax’s skin was so thin, it could rip from our touch. Jax’s blood supply was already in peril. He needed regular blood draws and heel pricks to check blood gasses and other things and his body was having a hard time replenishing the blood. The last thing we wanted to do was rip his skin and make him bleed!
Luckily, we didn’t hurt him while we held him. Instead, we got to bond with him and let him know we were there with him. We weren’t outside observers anymore. We were parents.
This year has hit us a bit harder than expected. The first year, we were still in the thick of things – Jax had just gotten off of oxygen and was starting all kinds of therapy.
The second year, we got slammed with the brain tumor diagnosis.
This year, it’s quiet. (Thankfully.) But that quiet has allowed our thoughts and feelings to sneak up on us.
It’s amazing how the human mind can protect (and sabotage) a person. We’ve had to be on high alert these last three years and it’s starting to take it’s toll. We haven’t had time to let our guard down. We haven’t had time to really relax. We’re always worried and waiting for the other shoe to drop. We’re on high alert now as we prepare for Jax’s next brain MRI and hypospadias surgery in a few weeks.
This constant state of anxiety is not healthy. We know that. We’re doing our best to take care of ourselves. We’re doing our best to be grateful. We’re doing our best to let go of the stress and worry. Most of the time, it’s easier said than done. Today has been a hard day for me.
But, I think back three years ago, to the day that I finally got to touch my son. To the day I was able to call my son by his name. To the day I felt like I became a parent. And well, I know that if I can make it through the fear of ripping my son’s skin, then I can get through whatever bad days come my way.