It's 11:30 at night and we are sitting on the couch playing a game. Robbie mentions he needs to grab something from his room, He gets up but he trips. We try to get to him in time but he falls. It's a slow fall so we think he's okay. He's on the ground though and he is making weird noises. He says he can't get his breath. I'm on the ground with him now and his lips are starting to turn blue. He's sitting up but its too hard for him to do on the ground anymore. He just doesn't have the core strength. I get behind him let him lean back into me and we get him breathing and calm again. Shelby gets a gate belt and we get him in a desk chair. He is still kind of panicked his back hurts a little and he wants his water. Slowly he starts feeling better. I go where he can't see me and I break down. Madi finds me, I tell her it's okay I was just scared and she says she was too. He's okay, I leave the baby monitor in his room for the night. I listen to him watching youtube videos and commenting out loud to himself, he's okay, he had a minor fall and a panic attack, I know that but I am having trouble relaxing and going to sleep.
Duchenne happens slowly. taking a little bit and a little bit more all the time. Most people miss the subtle changes to our life or the small ways we are just different. Some times the 5 of us forget too. We start feeling normal but normal just never comes there is always some new thing we are adjusting to. Tonight we were just sitting in our family room playing a robot rap battle game. We had spent most the day doing Christmas prep and though this time of year brings up so much sad feeling we were just content for a few minutes. Then I was on the floor with my 13-year-old in my arms trying to get him to calm down and breath. He's okay I just keep telling myself. Please just let him be okay.
I hate sharing this stuff. It's 2 days before Christmas. I know it sounds dramatic and it's not feel good or inspiring but here's the thing: this is what it is like in our house. We are close and we play games where we are rapping robots. There are presents are hidden all over the house and last night we had nitrogen ice cream and took our kids Christmas shopping. Tomorrow we are going to the movies with my parents. We will open presents Christmas eve morning before we go spend a few days in Ohio with Shelby's parents. We will come home and have Christmas with my family. We will then have our annual "McGregor Week" which is a fun way of saying we are going to wear PJs, make our favorite foods and binge-watch everything. Our life can feel really hard and overwhelming because, I mean, it is. Also, it is full of love and laughter.
I'm angry a lot of the time. I think its represented a lot on this blog. Honestly, I recently went back and read a lot of my posts from the last couple of years and I realized almost all of them are me trying to justify feeling angry. I'm sort of tired of doing that. I'm not going to be doing that anymore. Anger is just an emotion. I was watching an interview with Alanis Morrisette recently and she talked about anger and the power it represented. That a lot of bad things can be born out of anger but there is also power there. I agree with her and I also think a lot of good can come from anger. As long as its not the only thing I'm feeling I'm just going to let it be. Maybe it's not a character flaw, maybe I'm just strong enough to let my self express it.
2019 was sort of a weird year around here, highs and lows and in-betweens, but I am so happy to be my husband's wife and my kid's mom and I hope everyone of my friends and family have a happy holiday.
No comments:
Post a Comment