Owen slept all night. In case I had any doubt he does not want to go on any more field trips. He made it abundantly clear the numerous times he said it to me before he even got out of his room. He first made sure I knew he “slept upper night” and then he started telling me about the field trip. I can only imagine what goes through his mind.

He was ready to get dressed and see his teacher even though it was barely after five. He repeatedly asked to make sure he was not going on a field trip today nor next Thursday or Friday. He was covering all his bases. He wanted to be with his teacher and do exactly as his routine should be.

We got ready and he wanted to make sure he was getting to wear socks. It truly is amazing what goes through his mind. Some days trying to get him to wear more or less a shirt is a chore so when he decides he wants socks I’m like more power to you dude especially when it is cold outside. He is still learning how to pull them up so a lot of times he can get them on his feet but if they are number than anklets he can’t pull them all the way up. I help him put his hands in the right place and we pull them up together.

We got outside to wait for the bus, not a care in the world about the rain. I am so thankful he doesn’t scream about the rain anymore. He saw the bus turn the corner and he started jumping up and down. He went through all the things but got on the bus quicker today and they were off.

When he got home he was telling me where he was going tomorrow and who he was not seeing next week. He was pretty calm at that point and excited about his weekend. He was focused on the difference between his previous teacher and his new one. He does not want to go back to his old so he is focused on asking to make sure he will not see anybody but his new teacher. He was counting how many more Augusts he had with her.

He told me his “grandma needs an update for black computer it needs more memory and apps.” He loves playing on her black computer but it hardly does anything but a few games. He still loves playing on it though.

I watched a video talking about how sour candy can help
with anxiousness. It helps to distract the sensory emotions. I am going to see if I can find some sour gum or some of those other sour candies and see if anything helps or he will eat them. Even if it worked for a minute that would be great.

As he was getting in bed he was talking sleeping so he could go to his grandma’s house. If he doesn’t sleep I will not be bringing him if he screams at me. I hope he makes the connection. He was out quickly. The fake laugh made him laugh today and that made me laugh even harder. Laugh and let the world hear you. It will make a big difference in someone’s day. Smiles to all and donut daze!

I don’t think Owen wanted to go on his field trip at all. He woke sometime after three to tell me he didn’t want to go. I think it was too much for him to think about. He was calm otherwise and ready for all of his other things. He couldn’t wait to get to school and see his teacher.

When we got up, I went back through the steps with him about the field trip. I wanted him to know that he could decide to go later on if he wanted to. I explained to him again that it was just a field trip and he wasn’t changing schools. He kept thinking he was going back to his previous school.

We got ready for school and he talked to me again about not going to the field trip. Once we got dressed, he started talking about his therapy for later in the day. He asked me if his grandma was going to pick him up. I wasn’t sure if she was going to pick him up or if I was going to because we had a plumber coming to fix our pipes. The other day when I told him not to put anything in the toilet, I’m not sure if that happened. He is now finding it to be funny to do things like that so I’m not sure if it was because of that or something else, but we were having drainage problems in our basement.

I had told his teacher that he didn’t want to go on the field trip but when he got to school, he may decide that he wanted to go and that was fine with me. I wanted to make sure he still had the opportunity to go if he wanted to. He told her that he wanted to go to be with his friends and to get game snacks, but he was still upset once he got there because she didn’t come. She stayed back with the other students that didn’t go.

He was happy to see her when they got back from the field trip. He was also happy to see his grandma when she came to pick him up for his therapy. I stayed home and waited for the plumber.

Thankfully, he did really well at his therapy and he wasn’t upset about any of their clothes or activities. After he was done with his therapy, he went to his grandma‘s house for a little while and then we met so I could get him.

He was happy he didn’t have to go to “elementintermediate” combining the words elementary with intermediate. He was happy was still going to be in middle school. Bathtime seemed to flow right into bedtime, but thankfully, he was calm the entire evening. His laugh is always amazing and makes me smile. Find what makes your heart smile and go after your dreams. Smiles to all and donut daze!

Everything is something unless it is not. Owen slept all night. I slept in between my awake times. From his bedroom, he started talking about my bunny ears and what he would be doing this weekend. He woke with concerns about what color my hair would be when he was in high school and who his summer school teacher would be.

Oh, how I wish I could find a way for him to live in the moment. He stood at the table watching the car drive through the streets he loves. “Turn left,” he yelled while doing a mix of the turn signal sound and “mmmm.” He then yelled, “he turned right” and was so happy he did it. That’s the way he wanted to go. The joy that washes over him from watching these videos is incredible.

“Take a tablet to church take a tablet to church take a tablet to church,” he went on and on after turning my light off. Words you say one day lead to something else another day. Reward systems and anything to correct a behavior become part of an ever-non-changing focus. I don’t know something is something until it becomes something and then that something is a part of what we now have to calm down and change.

We got ready and went out to wait for the bus. He was jumping up and down when he saw the bus. He could not get on the bus or then to his seat because of the field trip they were going on tomorrow. He kept talking to me and then the bus people about not going to his field trip tomorrow. I sent his teacher a message that told her he didn’t want to go on the field trip. I told her that she could make the decision tomorrow if he goes or stays.

When he got home it was the same thing. He was definitely thinking about the field trip. He immediately started talking about it when he got home. He told me he didn’t want to go. I said it would be a lot of fun. He replied with answers that made sense for all of this. He wanted to make sure he was not going back to the old school. He is very worried about that. I told him he was still going to be in middle school and that it was just an adventure for his class. His thought process didn’t change. Even when he was in the bathtub he was saying no field trip.

The night went quickly. He ate a big dinner tonight and was much calmer than the morning. He told me not to spit on people’s pants. I let him know this was great advice. He was focused on tomorrow. Both the field trip and his therapy came up many times. He fell asleep quickly and was ready for tomorrow. I hope he sleeps all night. He laughed a lot for me and he always says “Mommy likes laugh.” This makes me even happier that he knows I like it. Make your dreams come true and keep moving forward. Smiles to all and donut daze!

Owen slept all night. Routine is golden. I was in and out but slept better than I had in a while. Sleep is one of those things that always gets us in circles. He was definitely ready for exactly what he wanted his day to be.

The older he gets the more I see how hard things can be on him and when anything is not where he needs it to be that makes it even tougher. The one thing I am not is organized. The one thing I need to be is organized. I moved some things, my things because they were in the way and it completely interrupted his walking pattern. Now he keeps stomping the floor so he can feel the vibrations but it is so different for him. Instead of him walking through a section of our house once he now goes back and forth numerous times.

When he got home he was in a pretty good mood but still checking on his days. It’s interesting how many sounds he is making again. Like the eeee sound and him mimicking a car driving. I don’t know if it is because he isn’t wearing the headphones or other reasons but he is doing them a lot more. He has made the eeee sound since he was little. I think it is just one of his comforting sounds and the other sounds he has learned from so many other sources.

He started asking about his summer school teacher from last year and wanted to make sure he wouldn’t see her again. It is amazing how many people he asks about on a daily basis, some I haven’t thought about in years. He doesn’t want anything to happen to his routine.

I had the wrong bunny ears on but otherwise calm for the rest of the evening until it was bedtime. He had been wanting to take a bath but wouldn’t get ready so I just let him play. He got mad that I wouldn’t let him take one right when it was bedtime. I told him he could take one in the morning but he was screaming about it. I didn’t give in to the screams though. I wanted him to know that he should have listened to me earlier when he kept asking for one. He gets focused on something else and won’t listen even if he wants something. He went to bed and was asleep in minutes.

He told me when he got home from school he wanted to go to Burger King but then he told me to the park and have pizza. As soon as he said it he took his clothes off and said he wanted to stay home and go tomorrow. We will see what he says tomorrow. I’m thankful he was calm for the most part tonight and we had a good day. Hopefully, we will both sleep tonight. Be in the moment and be in the light. Each day is a gift. Smiles to all and donut daze!

Owen slept all night. Me not so much. The last few weeks have been a rollercoaster for many reasons. The days have been hard because he is constantly checking on his schedule even more than he ever did. The extra snow days took away the confidence we had been building about his schedule. One day at a time I keep telling myself. I can accept change quickly and I still don’t like change.

He got ready without too much fanfare and we went out to wait for the bus. It got here early and they were off. It took him several seconds to get on the bus. He wanted to make sure everything was happening and I hoped today went according to his plans.

I picked him up from school for his music therapy. He did good. His therapist said the other student led the activities. Owen followed and was fine with it. This was huge progress.

We came home for a little bit and he ate his snack. He started walking over his same footsteps, listening to how they echoed on the floor. He was in sensory overload and everything seemed like it was something. He was in hyper-repetitive mode and did not want to leave my room but he was happy for routine and wanted to get ready for his vision therapy. He was stomping all over the house and then stomping again over the same places.

He crept asking me questions but he would answer and he was mimicking me. “Mmmhmmm,” he said in my tone and inflections. He said, “Heard it you did hear it” to noises outside and then he said the mmmhmmm in long drawn out tones like me when I am answering him but can’t get an answer in edgewise.

We went to his vision therapy and he did fine getting there, then he was upset and misbehaving, and after that, he did pretty well. He was happy about his schedule but it was a lot for him. He ate his fine and wanted his bath. He got in the bath and said, “I am soaking wet.”

He went to bed asking for “Children’s Therapy Clinic Santa.” He said, “Children’s Therapy Clinic Santa not today but when you behave in December you get Santa with dinner.” It’s a long way away but I believe he wants dinner with Santa. I’m hoping today helped ease his mind about his routine. I’m thankful for his progress even on a bumpy day. Remember to let yesterday go and make tomorrow a better day. Smiles to all and donut daze!

So close yet so far away. Owen woke up a little after four. He was concerned that he was going to see his summer school teacher again and that he wasn’t going to go to high school. One was going backwards and the other was going too far forward for now. Once we got past that he wanted to make sure we were going to church and the bus was taking him to school tomorrow. There were a few more things but he took his tablet and yelled all of them from the couch.

He was calmer after the first initial moments but he was very ready for church to be right at that moment. The screaming wasn’t as bad as yesterday when he first woke up, he made up for it later, but his worry was greater. I need to focus on how to calm his worry. The worry comes from a lack of a consistent routine over the last month. The snow has not helped either. Plus I blame the snow for a lot of our problems of not being able to go anywhere so he holds onto every word I say and any mention of snow or the cold weather sends him into overdrive. This morning he was in overdrive.

He was so glad to get ready for church that he listened to everything I needed him to do. It was very busy when we got to church and it was hard to find a parking spot so our friend came to get Owen but he wouldn’t get out of the car until he went through everything that was going to happen this week and to make sure he was going to see his teacher.

He was happy to see his people. I was happy to see them too. He was very concerned about his week ahead but calmer once we got home. He didn’t want to go to get any food when we left so we ate at home. It had been a while since I tried cottage cheese with him so I tried again and he loved it so I put more in a cup and he was eating it by himself with the spoon out of the cup. It makes me happy when he likes new foods and he uses his silverware.

I try to get him to understand that I can’t answer the same questions over and over and I just can’t do it constantly. He wants me to do it every time he asks something and that’s why the screaming happens so much. This afternoon we worked on breathing techniques and hoping that it will help him when I’m not always able to answer all of his questions.

“Down the drean,” he said as the water went down the drain. I said, “Drain” and he started repeating it. He was watching the water drain out of the tub and then he started talking about high school again. I need to find out what high school Owen is going to. He keeps talking about going to high school next year. I tried to explain to him that he wasn’t going there yet and that he had two more years.

Bedtime went quickly and I pray that he sleeps all night so that he can go to school tomorrow. He’s very excited about his music and vision therapies. His fake laugh got us through a lot of the day and it certainly made me smile. Never give up on the hope for tomorrow. Smiles to all and donut daze!

One of us was calm and very much asleep and one of us was extremely ready to get their Saturday started at three o’clock in the morning. I do believe Owen thinks four in the morning on Saturdays is the new time to go see his grandma after a depot run and a few fire hydrants.

He didn’t get that it was still hours away until he could see his grandma. He started yelling when I told him it was the middle of the night and he needed to go back to bed. He started talking about driving by the depot but I told him that I was not going to take him every time I bring him to see his grandma because he would want it every time. He didn’t go back to bed and he did not stop screaming about it.

I fixed him first breakfast, got my coffee started, and figured I’d get a long winter’s nap some year. He was excited to get to his grandma’s house but he wanted to make sure that I was properly dressed. This is one of those cycles that I wish someone had answers for me. When you are dealing with a genius inside of a tiny body that can’t quite process everything it can be a rollercoaster of emotions for both of us. It’s the fine balance of how many times you can ignore a statement or a behavior before the screaming, meltdown, or the calm begins. And if you ignore it what will happen. There are so many rules to follow to break behaviors but when you are dealing with a genius it makes it even harder. He knows all about the rules and how to get around each and every one of them. And when you are exhausted the rules are thrown out the window so the screaming will stop and my not so tiny little human knows that. The cycle of life as I know it.

I took him to his grandma’s house and I came home for a while to hear myself think. He stayed with her for several hours and then she drove him by the depot which I have determined is a transformer box that he wants to see and it is down from the depot. After they drove around it several times they came to meet me at Kroger.

He was mostly calm on the way home but laser-focused on his days ahead. He does not want his schedule interrupted anymore especially when he is going to school. He will be very happy when winter is over so he can go every day to school. I’m already thinking ahead to spring break and all summer long.

The evening went quickly. He stood at the table making his eeeeing sound to himself while he was playing with his tablet. He makes that sound when he is doing activities he is super focused on and excited about. He was watching the driving videos that were “available.” I think that is one of his new favorite words.

He told me that he was going to high school in a year. I said in a couple of years. He said, “Not next year year after.” I didn’t want to tell him it would be a little longer than that. He then started talking about his best friend being in high school with him and he got more excited.

I knew the hardest part of my cancer journey would be what my sweet baby O thought about my hair. He asked me numerous times to grow it by February. It’s only January and it wouldn’t be long in a ponytail or blonde by then. I stood crying and he stood next to me. When he saw me crying he laughed at me. He said, “Mommy like laugh.” He knew that I loved his laugh and his understanding of this made it that more special. It was a rollercoaster with him and my hair today. He also spit on me because I didn’t have my bunny ears on but he couldn’t wait to feel my emotions for that as well and he told me he was sorry all night long. If cancer has taught me anything it shows me that there can be so much of a deeper connection to the ones you love if you embrace what you are feeling and accept what you feel.

He is beyond ready to get to church tomorrow and he told me that it couldn’t be dark when he got up. I thought that was a huge step. Learning through love, adapting through hope, and knowing that tomorrow will be the same but different will keep moving you forward. His laugh brought me joy in knowing that he had come so far. Be proud of where you have come from and look ahead to great days. Smiles to all and donut daze!

I woke with a start several times but I suppose I slept better than most nights. Owen slept all night and before he even got out of bed I could hear his list of concerns. He first stated he “slept upper night” and then he started listing all the things he wanted to know about. My bunny ears, seeing his teacher and everyone else at school, going to his grandma’s house on Saturday, and taking his tablet to church were at the top of his list. Once those were talked about he moved on to seeing his best friend. Oh, how I wish I could make that dream come true.

He was very happy that another one of the driving videos would be “available” in “thirty-six minutes and set the timer.” He wanted to make sure he didn’t miss it so he came to me with his tablet to show me the countdown clock and then he wanted to make sure he set the timer correctly. He would randomly come back to show me the countdown clock and timer. When it finally was available he watched as the person drove to the different areas he loves.

He was off to school after a big debate about his clothes and continuing to lean over and bite his pants. I changed him to his requested blue sweatpants and then he was happy about the start to his day. Before he could get on the bus he had to make sure he was going all the days next week and that he was seeing his teacher today. Off they went to one of his happy places.

He got home from school and immediately started talking about tomorrow. He told me how he was going to look at Google Earth to see all the fire hydrants he would go by and the blue church. I’m not sure which one is the blue church but I’m sure he can name them all and where they are. He was very concerned about my bunny ears and he wanted me to sit. The calmer he is the calmer the night goes and hopefully, he will sleep all night. Friday nights are always up in the air about how well he will sleep.

He never watches where he is walking. If I move one thing for any amount of time he will walk right into it. He now is starting to say “pay attention” when he is walking especially when he walks into something. One of the reasons he is in physical therapy is that he has a hard time with the concept of space and how to move his body. He would stand at the top of the stairs and spin around. He will look one way while walking in the opposite direction so I am always looking for ways to get him to pay attention to his surroundings. His vision therapy is also helping him to focus more on where he is about how he moves. I set up obstacle courses to help him learn to be more self-aware and work with how his body moves.

He was so much calmer about my head when it was balder. Now that it is growing out he only wants me to wear the bunny ears and is constantly talking about me having long hair again. It is like he can’t look at it because it’s not long. He seemed to handle it better when I first shaved my head. It’s growing but not fast enough for my sweet baby O. He keeps saying “When the medicine done then you have green ponytail” or he will say blonde or purple hair. I know he is trying to process it all and I know how hard it has been on him with my hair gone.

Calm was the name of the game for the night and I was thankful for that. He played music for me and we sang together. He listed all the foods he wanted for dinner which was pretty much everything we had in the house except waffles. When I asked him to pick one he said he wanted waffles and chicken. It’s always an adventure with food but I’m glad he eats a wide variety. Here’s to a good night of sleep so he can go to his grandma’s tomorrow. I love that he laughs his fake laugh because he knows I love to hear him laugh. Fill your heart with laughter and share your joy. Smiles to all and donut daze!

Better day ahead that’s what I told myself when I slept almost five straight hours and didn’t feel sick when I woke up. Owen slept until after six and quickly stated he “slept upper night” and that he wanted to take his tablet to church on Sunday. He immediately got on the leprechauns bandwagon and let me know they came to fix our toilet overnight. I was ever so thankful for them because I wasn’t sure what happened to them.

Hyper was the name of our game this morning and it was nonstop until he got on that bus. He had lots to tell me and he was making sure his day was in order. I wanted to make sure he didn’t miss it so I started looking early for the bus but it didn’t get there until about eight like usual. Before he could walk on the bus he had to repeat numerous times that he wanted to see his teacher tomorrow. I agreed with him so he would quickly get on the bus even though I wanted to go through with him that he would be seeing her today. Off they went.

He did great at therapy and was able to remain calm the entire time with both his therapists so he got a reward of driving to the depot. He started talking about how he behaved with his therapist and that he didn’t make me sad. I always tell him that I know it is hard for him and that if it is hard for him it makes it hard for me when he gets upset because of people’s clothing. I told him I was glad he had a good day and that was why we could drive by the depot and go to Wendy’s.

He was talking up a storm on our way home from driving by the depot and I was hoping it was not another snowstorm. He was telling me all the things he was expecting in the days ahead so I hope they all come true. He kept saying we needed a new blue house. I said why do we need a new blue house. He said to put it in the woods with marshmallow campfire. He had told me before we needed to go to the woods for a marshmallow campfire but the blue house part was new. I have said to him a couple of times over the last year or so that I wanted us to move to the woods but I haven’t mentioned it in a while.

I had my radiation markers appointment. It was a bit more emotional than I expected but it is one step closer to the end and I was thankful for where I was on this journey. We had a good night and for the most part, he was very calm. He took his bath and he was working through his words. He said, “Available watch it tomorrow” and I knew it was a new video of the person driving. He told me they were driving by the fire hydrant and he couldn’t wait. I love the joy he has in the little things. Find joy in the little things and watch how it makes your heart whole. Smiles to all and donut daze!

It was a little bit of a rough start to Owen’s morning. He woke up and I didn’t have my bunny ears on. This has become a thing. He wants them on immediately. I think that my head is becoming harder for him to handle and he is now focused on it growing out. He was ready to get back to school. I was not feeling that great throughout the night so I was in very slow motion and nothing was going right.

He wanted me to eat a banana, talk to his friend’s parents, and wanted to know if he could take his tablet to church on Sunday. My bunny ears were his biggest focus followed by me eating a banana. I didn’t feel like eating anything so I tried to explain to him I wasn’t feeling well but all he wanted was our routine. How do you ever explain nothing in life is routine?

When there is a two-hour delay it seems like I can never do bus math. They are supposed to start school at eight but the bus rarely gets here any earlier than that so two-hour bus math in my mind should have put them here at ten. I started looking on the app for his bus a little after nine but I couldn’t see it. I sent a couple of messages to the bus aide but I don’t think my phone was sending them and it’s on its last leg. To say the least, the bus had gotten there a lot earlier and we missed the bus. I took him but that was hard for him because he wanted to ride the bus.

Thankfully he got to ride the bus home. He immediately went through all of the things he stores in his brain. He has a photographic mind and never forgets a thing. He was happy that I was able to get sausage dogs and I figured he would ask for them for dinner. He wants to go to the depot, Bob Evans, Dairy Queen, and get a pizza after his therapy tomorrow. I told him we could do something if he was calm with his therapist. It is amazing to me that he is always talking about food places and that he actually will go now. This was so hard on him for years.

He was so happy because I agreed that his grandma would take him for a ride on Saturday. I can’t know for sure that she will but I went with what he said. Sometimes it is easier to agree than to cause the waves of emotions that it would have if I said I don’t know.

He was going through all the foods we now have. Then I realized that we were out of veggie straws because I had given him the last of them for his snack. He was all over that and wanted me to order them. I told him that I would get more soon. He then asked me if the mailman came. I asked him what the mailman was supposed to bring and he said his robot.

Let’s just say the day ended about as it began. He has come full circle and is back to having a fascination with the toilet. There was a mess everywhere and I’m not sure if he stuck something down it or not. Let the adventures begin.

He wanted all the leprechauns to focus on our church for Sunday. I pray for better days ahead with the weather. Tomorrow I go for my radiation evaluation appointment and we will keep moving forward. I pray Owen sleeps tonight and I wake up with a bright shiny attitude and nothing else breaks or clogs. Focus on the sunshine of tomorrow and let that bring your heart the light. Smiles to all and donut daze!