Life with Jobe (Sept, 2018)


As I sit here watching my son try not to fall asleep in the chair next to me, I think of how this is the life. It is 9 pm and we have been hanging out all evening. I’ve had many jobs in my life and I know it sounds so cheesy, but being a mom is definitely the best one. I suppose “best” is relative, but I mean the most rewarding, the most inspiring, the one I feel the most love

from. However, it’s a job I feel like I have forgotten how to do. For months I was gone from my son, for years I have had help with him - through my grandparents and other family members. I have spent my nights feeling like a horrible mother and spent my days doing little to change that feeling. There wasn’t much I could do. My body was run down and exhausted. My temper has been short with him at times because I have felt so awful. Patience tends to run thin when your whole body is worn out. It’s hard to control your mind when your body is exhausted. However, tonight is our night to spend together. My grandparents are gone on vacation for the next few days and it’s just him and I. I have been thrown back into this mom thing full force and I’m loving it.

When I was stuck in the hospital on life support, unable to move much of my body, all I thought about was coming home to him. Of course, I have other family and friends that I would hate to leave behind, but mostly it was him. The thought of leaving him in this fucked up world scared me more than death, so I fought to live. When everyone else gave up on me, I don’t think he ever did. My whole family thought I was going to die, all of my friends and the doctors thought I was going to die. Dying was not an option, my son was only ten years old and I was not done raising him. I entrusted my family to help me raise him for these last couple of years with my input and help. Maybe I couldn’t fully be the mother I wanted to be, but I could help to be there for him emotionally even if I wasn’t able to make him all of his meals or clean up after him or do all those other things a mother is responsible for doing. Physically I was always too tired to do much other than sitting on the couch and offer what little advice I could. I left the physically difficult stuff to my family and they were good at filling in. I took on the emotional talks and tried to help him mentally and emotionally through all of the craziness that was our lives. That still is our lives.

Coming home from the hospital this time after nearly a month was awesome, but difficult. It was just us, which gave us a chance to bond. Jobe loves being home alone with just me because it doesn’t happen often anymore. I put dinner on to cook in the crock pot this morning and cleaned all day, then I went to Jobe’s school for his cross country meet. I got there early and got to see him hanging out with all of his middle school friends. I can’t believe he is in middle school, I feel like just yesterday I was in middle school. I remember so much of my sixth-grade year, especially the beginning. Making new friends, having new crushes, all the stress of many classes and getting around a bigger school. Which in retrospect wasn’t very big, Jobe has been to much larger elementary schools than my middle school was. However, it felt large to a tiny eleven years old me. Just like I’m sure it does for him, I think it’s just the switching of classes for the first time. Everything is so different in middle school, there is no coddling anymore. No warnings, no papers going home to the parents, the students are responsible for communicating things. None of which I was very good at and neither is Jobe. We are both quite disorganized. It’s hard to get mad at your kid for doing the same things you used to do. At the same time, you want your kid to be better than you are. I try to help him become more organized and responsible, but it’s an uphill battle I’m not very good at fighting.

Anyway, back to cross country. He didn’t notice I was there at first so I got to watch him interact with his friends without him trying to be anything special for me. It was quite interesting, he was definitely the center of attention and everyone seemed to love him. Finally, he turned around to bring a chair to his coach and noticed me.

“Mom! You’re here!” he dropped the chair and ran to me and gave me a huge hug. In front of his friends and all. He asked if I was all better and if I was feeling alright. He’s always tried to take care of me and make sure I’m ok. I assured him I was feeling much better and told him he could go hang out with his friends, I was fine. He introduced me to many of his friends I hadn’t met yet and a few girls came over to introduce themselves. He’s quite popular with the ladies already. I enjoyed seeing how happy he was with them and how much everyone liked him.

I hung around for an hour until the races started and Jobe would come over and chat with me every once in a while. There was just an inner peace in me for the first time in a while. The hospital drains me of happiness at times, it feels so lonely and boring. Especially this time, I felt like all the hard work I had put in wasn’t paying off because I was still in the hospital after transplant and in there for so long. I thought after my transplant I would start to heal and would be able to do all the things I had wanted to do for so long and there I was doing the same thing, in a hospital that I wasn’t really that familiar with. Obviously, I have been getting more familiar with it over the last six months, but I missed my other hospital. The one I was used to and comfortable in. I missed the nurses who knew my routine and I missed the warmness of the children’s hospital. The colors and the crafts they could bring in for me. Here there was nothing to do. I was emotionally spent, but just watching my son and seeing him happy I could feel his energy flowing back into me. I started to wonder why I fought so hard if I still wasn’t able to be there for my son like I wanted to be. I had missed his first day of middle school, I missed his first cross country meet, I felt like over the years I missed so much and I was still missing the important things. I was being self-deprecating, I was feeling sorry for myself. Which by principle I try never to do. It’s selfish. It also doesn’t do anything to help the situation, so I try to kick myself in the butt whenever I feel that way. Except I didn’t have to do anything except see my son to get knocked off that course and feel excited about life again.

When we got home from the meet, we ate dinner and played games. We cleaned up together and talked about everything I had missed. He told me all about his school and his friends. He told me about the older girl that had a crush on him and wouldn’t stop staring. I asked about the girls at the meet and said they seemed to like him. He said one of them was his ex-girlfriend from last year and that she still likes him a lot. She seemed sweet to me, but he isn’t interested. I’m not sure if he’s interested in any girls right now or not, I know he has had girlfriends in the past but he doesn’t seem to care about any of the girls that like him right now. Which is fine with me. It’s so funny how much older and bigger the girls all seem now. They mature so much faster than the boys and they all seemed to grow up so much over the summer while the boys are all still the same size. I remember that as well, all the girls looked like women when I got to middle school and I still looked like a little girl. Hell, I still look like a little girl.

We have been sitting here watching Raven’s Home for an hour or so, it’s a spin-off of what was one of my favorite shows when I was younger. I probably enjoy the spinoff more than I should at 30 years old, but hey… at least it’s something we enjoy together. Jobe looks exhausted and admittedly, so am I. I need to get him to bed and do all my medications so I can go to bed too. Today was a great day, I missed him so much. I don’t know if he knows or understands how much I love him, how much I fight for him every day. I hope one day he will. He’s a pretty smart kid with a pretty good head on his shoulders, so I’m sure he will. He deserves to feel so loved and so wanted, I want to be that mother to him. I hope one day I can be a completely full-time mother again, but right now I think a few days is enough. I’m tired, but he is so totally worth it.

#cysticfibrosis #family #transplant #lungtransplant