The days seem to all blend together. I was thankful Owen slept through the night and woke up in order. Sometimes I feel like we are all out of order and if we don’t do our steps in the right order we have to start all over again. Routine, rules, order, or routine order, rules, or order rules routine, and the list and direction all make a difference or so it feels. But today felt like the right order for our morning and it went pretty smoothly. We both woke a little early and we both wanted the coffeepot to crank out that magical juice a little quicker but otherwise we were both happy. He sat in bed with me laughing at his tablet and talking to me about his days ahead. When it was time to get ready the word “mostly” sticks in my mind. He mostly listened and mostly got dressed on his own. When we went outside to wait for the bus I was anxious. It was raining. Thankfully we have been working on the rain and standing on the porch out of the elements. Both of these things are hard for us. Harder than harder. Hard, hard. Like really hard but huge progress is being made. I started worrying if I should get our umbrella but then I thought it won’t help the process we just have to get through the rain on our clothes and maybe that will help us move forward on different things. He was distracted by asking Siri lots of questions about how to say words in all the languages. “Buffalo buffalo buffalo in French,” he said, laughing as she pronounced each word. Not much longer and his bus came around the corner, and his smile washed across his face. He came home with his attitude in full force. Sometimes if he has a really good day at school, he comes home and everything just goes into motion for him and today was one of those days. We did our breathing exercises and he started to calm down. He wanted to take BeatBo to the North Pole to see another robot. Then he told me he needed to build another robot so he needed a screwdriver. As the night went on he got much calmer. He has been screaming more lately and tonight was no different but I think he is going through a phase of backtracking. He is circling through his old responses and apps, playing games, he hasn’t played in over a year. He is constantly pushing the airplane button on his tablet which disables the Wi-Fi and then he screams that the Wi-Fi is not available. He also deletes apps and then wants them immediately back on like YouTube. He doesn’t understand that when he turns off something or deletes an app that it can change the properties, and we have to reinstall or add them back in depending on the app. He cried when he could not get back to the Internet. He deleted YouTube added it back in and then he kept pushing the airplane, so it was turning off the Wi-Fi, and not letting him go to the things that he wanted to go to. I finally added the app back on and fixed all the settings, and he was fine. I’ve been trying to get him to take his shirt off differently for years. The one he had on he couldn’t get off his way. He said help and I pulled his shirt down. I told him to try it the way I always tell him to do it and it came off without a problem. Maybe he will start trying it my way. He had a lot for dinner tonight when he hadn’t been eating as well in a while and so I was glad to see that. After his bath, he struggled to go to sleep tonight. His toenail was bothering him, and then he wanted to lay on the floor and just everything was something so he finally fell asleep, but it wasn’t until later than he normally does. The last few days have been really hard. I’ve missed my brother and I’ve struggled with not being able to talk to him. I wanted him to share in our victories over the last few days and talk to him about my challenges of the things that I’ve been going through. Grief doesn’t fade away in an instant. It took you years, months, days to get to know that person, and here they are gone in an instant so grief doesn’t end when that ends there’s a lifetime of memories that hold you rooted in the ground and no magic amount of time will take your pain away. I remind myself that he would tell me to just keep putting one foot in front of the other so I’m putting one foot in front of the other with some tears in my eyes but I’m moving forward. Never give up on the hope for tomorrow. We always need to remind ourselves that today is a moment in time. Keep looking, keep reaching, keep striving for a better moment, a better day. And be kind to yourself when some days feel hard to keep moving forward. Smiles to all and donut daze!
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