Waking up early is what we do sometimes and today was one of those days. I was too exhausted to say look at the clock more than once and to hear the screams over and over. Owen took his tablet and at least went back to his room. I tried to sleep a little bit longer but he came several times to ask me when he was going to school.

Once I got up and got some coffee, I could think a little bit clearer. Owen knew he shouldn’t have screamed at me, but he’s still learning to process it all. He’s very anxious about school ending on Monday and I know that has a lot to do with him not sleeping.

He kept coming to me to ask me when he would see his best friend, and when he was going to school. He moved on through the days like he was flipping the pages of a calendar. He talked about all of the holidays covering almost every month. It’s amazing how much he remembers and what he focuses on.

We worked on some of our crafts this morning for his gifts and it’s amazing how much he loves to do all of the different activities now. He is constantly asking me to use scissors and cut paper. I think I’m going to need a lot of scrap paper this summer.

It was finally time to get ready for the bus and then we headed outside. He wanted to go wait early. He loves seeing the bus come around the corner. I’m thankful for how much he loves going on the bus. I know sometimes he gets anxious on the bus, but he absolutely wants to go every single day.

When he came home from school, he was on edge. He repeatedly asked me over and over again about his school on Monday and when summer started. He goes through these moments and will continue to say the exact same thing and then he switches to the opposite. He expects me to answer each and every time he says something but he will say it ten, fifteen, twenty times. He kept repeating that Monday was his last day of school and then he switched it to say that he would still be in school on Tuesday. I had agreed with him about Monday being the last day of school and then when I realized that he had switched to talking about Tuesday, I knew what was going to happen. He started screaming, and I told him that I can’t always have the right answer especially when he says the wrong answers.

He was back to talking about his therapist's clothes and I told him that we couldn’t worry about her clothes. I try to get him to understand that he wants to wear what he wants to wear, but he still wants others to wear exactly what he wants them to wear. I asked him about wanting to swim and he can’t wait to go. Then I told him that if he expects others to wear only what he wants them to wear, then he won’t be able to wear a swimsuit. I keep hoping that if I can help him make the connection to wearing something others want him to wear that maybe it will help him see he is trying to get others to wear things he wants them to wear and not what they want to wear.

After those first initial moments in time, he calmed down for the rest of the evening and once again, he talked about all the different holidays during the year. He was also wanting to know if he was going to see his grandma tomorrow and I told him again that she was still in the hospital. He asked when we would be able to go pick her up and I told him not for a few days. I hope this helps him understand and he will sleep all night. I’m thankful for his progress and where we are today. Find your happiness and share your story. Smiles to all and donut daze!

Owen slept almost all night. He came to me a couple minutes before five and I told him to go back to his room. He read the clock in the kitchen and was right back to me with a scream. I said to go look at the clock again. He came right back and I said go to your room until it says five o’clock. He walked off saying “Five oh oh.” He came back again right after five and was very calm this time and had lots of questions to ask.

We talked about his behavior and that he can be upset but screaming is never an option. Thirteen is such a big change to our system with growth spurts, hormones, and emotions all mixing together. Trying to express how they all work together or not work together is a whole big ball of wax. He was calm after our first initial wakeup moments. Thankfully, I slept more last night than I have been.

Our morning went fast. Maybe not as fast as Owen would have liked but it went fast to me. Learning to live with the unexpected like a truck pulling up while waiting for the bus can be hard for him. We were watching for the bus and a truck pulled up. Before they even finished parking across the street he started saying “They’re leaving tell them bye bye” and raised his hand to make the gesture. It wasn’t much longer and the bus came around the corner and the truck was all but forgotten. He had to get his last few questions in and then he ran to the bus.

As I told him goodbye I saw the telltale signs that he was getting a mustache. “I mustache you a question,” I thought, and “oh boy” came quickly after that. He is truly growing and my boy will be a man before I know it. The bus started moving and I watched as he waved goodbye to me with the aide. It was almost like a pageant wave. He sticks his hand up and kind of turns it back and forth, with an up-and-down movement.

I picked him up from school and off we went to therapy. He immediately started talking about his therapist’s clothes. I’ve yet to figure out how he randomly selects people that must wear what he expects them to otherwise he goes into full meltdown mode. We are trying to get him to understand that people are allowed to wear what they want to wear. He gets so stuck on it that he can’t get past it.

His therapist had told him that she was going to wear something completely different for this session and he repeated that all the way there. He went with his first therapist and did fine. He then went to his next session and he couldn’t get past what she was wearing. He was crying and in a huge meltdown. She said they got through a few things and she thought he had calmed down so they could finish and it started all over again. She does an excellent job of trying to redirect him but he tells me that he wants to be sad. Add this to another one of our summer goals to help him through this process.

When we were coming home and he was so upset I asked him to sing, trying to distract him. He started singing “Row row row your boat.” He kept it up for quite some time. I was quite surprised he did it without me asking more than once and he let me sing with him without screaming. I could tell he was working through his emotions about how sad he was about her clothing and screaming at her. He randomly cried all night long and would say he was sad. I’m thankful he is making these connections to his emotions I just wish it wasn’t so hard.

I asked Owen what foods he likes to eat best. I was getting ready to order groceries and wanted to see what he would say. Usually, he responds with veggie straws and that’s it. He said, “Sausage dog, pancakes, waffles, fish, chicken, shrimp.” He eats many other things but I was pleased he listed all of these. He is truly growing up.

Our night was filled with him talking about his feelings. It’s emotional for me to hear him referencing them at all. It is one of the things that he has always struggled to express and he was telling me that he was sad and why he was sad. He went to bed excited for school tomorrow and I kept thinking only two more days. Each day I see progress even through the struggles. I pray for a great day tomorrow. Let the song of life be filled with the melody of love, kindness, and grace. Smiles to all and donut daze!

I woke up a couple of times listening to the sound of the world around me wishing for a quieter night but here I was. Thankfully though the noises didn’t wake Owen and he once again slept through the night. I wanted to get up but I knew as soon as I did it would wake him. I stayed in bed a little longer and I could hear him getting up. I was thankful, completely and totally thankful that he was sleeping better again and woke in a great mood.

He told me that he needs to sleep every night until November. I told him that would be fantastic. I’m not completely sure why he chose November but I’m all for it. He was excited about going to school and couldn’t wait until it was time. He reminded me to not disappoint him and to make sure he rode the bus home. I told him that I planned on not disappointing him.

The bus got here early and we were basically ready but I had to rush him out the door. We have an app to see where the bus is on the route but it only starts showing the location about twenty before they generally arrive. Right when I was able to see the bus on the app, they arrived. I got his backpack on him but he wanted his jacket so we quickly put that on. He has to go through his questions before he will get on the bus. He was a little agitated and I prayed he didn’t have a meltdown over it. Thankfully he got on the bus and off they went.

When got home he was full of himself and telling me all kinds of stories again. He remembered all of the things from way back when he was much younger and he realized summer was almost here. He was calm but elevated. He was also out of his jeans faster than I could even ask him if we were going anywhere. I said I thought you wanted to go play your drum and he said not today.

He stayed pretty calm most of the night and was very excited about tomorrow. It is hard to believe he only has three more days of school. He was asking Siri how to say the different names of people at his school and then he would add different activities. He was tired and hopefully, that will translate to more sleep tonight. I’m thankful for his laughter and his amazing smile. Find your joy in the little things and watch your world change. Smiles to all and donut daze!

Owen slept all night! I said a hallelujah for that. He was in a fabulous mood and couldn’t wait for his day to start. He was all about the week and even though he kept saying he hoped I didn’t disappoint him he kept asking when his grandma would pick him up from school. I was just thankful he slept all night and I slept more than most nights.

He is now fully embracing the word “disappoint” and all its versions. I am thankful he is connecting to the word but I feel like he needs to learn how to deal with disappointment. He keeps bringing up how I disappointed him several weeks ago because of not being able to tell him his grandma was going to pick him up from school. Even though he loved being with her it was not routine or what he was expecting so he felt disappointed that he didn’t get to ride the bus. I’m glad he can express it but I need to help him learn how to process it and move forward. It will be a good exercise to work on this summer.

We were getting ready for school and he told me he wanted the horse to wear my mauve dress. He moved on to tell me other dresses he wanted the horse to wear. I’m not quite sure how the horse will feel about it but we shall see. I didn’t tell him that my dresses wouldn’t fit most horses but we will cross that bridge when we come to it.

He came home from school and he was very happy and once again full of information. He would like me to try and not to hurt his feelings tomorrow. He says this because as much as he wants to ride the bus he also wants to see his grandma and asked if she is picking him up. He was calm and insightful as to how his day didn’t go I’m sure but boy does he like to tell stories. He told me all he did was scribble, tear books, and take his teacher’s scissors. He laughed and said she would be happy. I said I’m sure that is what happened and he laughed. He loves to tell the opposite of what happens and I’m sure he was the perfect boy at school but he loves his big stories.

We did numerous exercises and he also wanted to “cut paper with the scissors mommy use straight lines.” We are practicing more of his fine motor skills and working on new ways to do it like making beadable pens. He is also using utensils more and requesting food he has to have a fork with.

Owen’s prayer tonight was “Dear God thank you for Owen cutting paper.” He absolutely is loving arts and crafts now -mostly. It was something I never knew if he would ever truly be able to fully enjoy because he has always had such a hard time using his hands. I am thankful for his prayer and that he can connect with how incredible it is for him.

Bedtime came quickly and he was out not long after he went to bed. I pray he sleeps again. Each day is a gift and I’m thankful for his growth. His growth and comprehension skills are amazing. What he is learning and retaining is making a huge difference in his life. Never give up on the hope for tomorrow. Believe in the miracle yet to come. Smiles to all and donut daze!

Thirteen is going to be an interesting age. I feel like it is directly like one of those I always ask. Is it autism, age, or Owen? The three mix and mingle together but there are definitely moments where I know which is which. And right now age, hormones, and pushing the limits are all on his agenda.

All the nights and days are blending together. He was up around three with all his bells and whistles armed and ready. My answer was yes to all his demands and he still brought it all to the table. Tonight’s episode brought out the spitting. It was more controlled than last night though but still an adventure. He is definitely pushing the boundaries but I feel like part of it is pure exhaustion and he doesn’t know how to express it all. After an hour of all that he let me sleep again but came back around four. I told him that he had to wait until five to come back again and this time he listened.

I decided I would not take him to see his grandma. He was much calmer by morning but there were still moments he was acting out and he was beyond exhausted. I didn’t know if there was a right answer to what I should do but I knew it was all hard for him to process.

He came to me and talked to me about waking up early. I told him that it isn’t just about him waking up early but also about how he treats me and how we treat other people. He said again we give kindness and grace to others. I’m thankful he knows the right answer and I hope he will continue to make the connection to this behavior.

He was exhausted all day. He had his head in his hands lying down on my bed but wouldn’t fall back asleep. I do want to get him into more physical activities but finding something he likes is the issue. I think that will help him with some of these sleepless nights.

By the afternoon he was getting wound up and trying to show videos he knew I did not want to see. He thinks it is funny to show me videos of dentistry and eyeballs or anything else that he thinks I’m not going to like. This is where that age-appropriate part comes in. What teenager doesn’t want to gross out their mom or push their buttons? This is a behavior that I think will only be rectified by a tablet timeout if he doesn’t stop doing this.

I think he is feeling the pressure of all the things happening that he can’t control like school getting out soon but I can’t let it control what I do to help him get through the process. Yesterday I knew what I should have done but I still let him control so much of the moments. I try to avoid meltdowns but sometimes I think he is just going to have to go through it and so am I to get to the next steps. Meltdowns are hard to think about and I hope that I can continue to get him to work through the process.

The amount of things he has stored in his head is incredible. He said that Saturday is the 31st. It is wild how he can name random dates so far ahead. He is full of surprises with all of this information.

Tomorrow is routine and maybe that will help him sleep tonight. By the end of the day we had worked through several things and I hope they stick. I pray tonight is a better night for him. At least he was in a better mood or maybe it was me that was in the better mood. He sat with me a lot again today. He’s excited about going to school tomorrow. He told me he was laughing to make me happy and that makes me very happy. Today is the first day of the rest of your life so make each moment count. Smiles to all and donut daze!

My mind, body, and soul all hurt today for a thousand reasons. My beautiful, amazing son struggles with the everyday every day. It’s hard for him to process changes in the daily world of change and it is hard for me to explain to him that the only thing constant in the world is change.

The screaming began at 12:30. It is interesting how the two previous nights he was up at two but he let me sleep and was extremely calm. Yesterday threw him with the bus situation and now the long weekend but I don’t know that it added to why our night was so rocky. I even told him to take his tablet and go back to bed, and he could still have his Saturday but he kept coming for several hours screaming every thirty minutes. He finally calmed down but you know how that goes. He couldn’t even keep his eyes open and he kept coming.

He hit me this morning. It was deliberate and he knew exactly what he was doing. It wasn’t hard but it is not something that can continue. I told him that hitting was not an option ever and that if he did it again the tablets would all disappear. He is thirteen but this is a behavior that can get out of control quickly. I made him apologize to me and asked him why he hit me. He can’t always express or make the connection to those feelings but I wanted to make him think about his actions. I asked him if it was fair and he said no. I then asked him what we should give each other and he said, “Kindness and grace.”

I wish I had the answers and the right words to say to him. It breaks my heart that I can’t get him to see this is not how we handle situations or our weekends when he wants to do things. I think sometimes even though he wants to do activities it is still all overwhelming to him. He knows he is not supposed to act like this but acts out in this way for reasons he can’t explain or comprehend.

He was eating his requested sausage dogs with a fork and kept bringing up no summer school. That makes me sad too. It is so much for him to process. I have so much hope for him because he is now telling me the things that meant something to him when he was younger so being able to make this connection to his past feelings is helping him process all of these new ones.

We talked about his best friend and what he wanted to do for the next few days. I told him that I didn’t know if we would be going anywhere if the screaming continued and I told him that we weren’t going to see his grandma. I don’t want him thinking that he might see her in the days ahead because maybe, just maybe he will sleep if he doesn’t think he gets to see her until Saturday again. He was pretty calm throughout the day but also very loud in his talking. I’m pretty sure it was so he would keep himself awake.

He told me that he was awake at “0 1 0 0 o’clock in the morning” and that he screamed at me because he was disappointed I wouldn’t take him to grandma’s house in the morning and that he didn’t get to ride the bus home on the Tuesday that I had my infusion. I told him at one o’clock in the morning we didn’t know that I wasn’t taking him but it wasn’t even close to time to go to see his grandma anyways. Then he told me that her birthday was December 14th and we had to celebrate it. He told me that after that I had to go bye-bye so he could spend time with her. My little planner is planning his grandma’s birthday in December. I can only imagine all the thoughts that crawl through his mind especially since he is now able to express so much more.

He was going through his days before bedtime and told me he needed to behave to go. The words are at least there. Then he said he could go Monday to see you and I told him that we would have to wait and see because I didn’t know if you would be available on Monday even though he will probably get to go. He said we would have to reschedule for Tuesday. He never forgets a thing.

My eyes could barely stay awake all day and neither could his. I pray he sleeps all night and is calm tomorrow. He told me “he laughed like a boy” for me to make me happy. His heart is golden. I hope tonight my golden boy finds his sleep. Let happiness cure your broken moments and piece them back together. Tomorrow joy will come. Smiles to all and donut daze!

Well, the 2 am party train left again. I’m not quite sure why Owen is waking up so early but at least he somewhat let me sleep. He came to check on me a couple of times but he let me sleep until a little after four. At that point, I got up and I knew I needed coffee. He was ready to talk.

They didn’t have a bus driver this morning so I had to take him. He was handling it fine but I knew the ripple effect of moments would come later. I got him to school. He was not happy I didn’t follow the exact bus route but was super excited to see one of the aides when he got there.

He got home and he knew that he had a long weekend ahead because of the holiday. He was concerned about his grandma‘s hair and that she was changing it. He could hardly keep his eyes open. I hoped that translated to a good night. He had almost four hours until it was bedtime and he was ready to do his nightly routine.

He was once again full of lots of information. He decided my hair looks like my mom’s hair so I guess that’s progress. He was concerned that the bus was going to shock him even though he wasn’t on it anymore. He also wanted to go see his friend and then said, “If you could you would” because I always tell him if I could make it happen I would so now I say “If I could I would.”

“Screaming you are screaming,” he said about himself. He continued telling me that he wanted me to find the “bridge flags” on an app that he repeatedly tries to use but it takes forever to load. I try to get him to use Google Earth but he loves to ask me about the other app since I have told him so many times that it takes forever to load. He watched the little bubble continuously spin for many minutes and kept asking me to find the exact spot he was on. He finally closed the app and laughed and laughed and laughed while he opened the other one so that we could quickly find everything.

He moved on to tell me that I disappointed him since I didn’t tell him I was going to take him to school earlier that morning. I told him I didn’t know until exactly when I told him. He then told me to not disappoint him on Tuesday. I tried to explain to him that I wouldn’t know about the bus until Tuesday, but it’s still such a process for him to understand.

“When the medicine is done,” Owen said again referencing our summer and wanting to go to the pool. I told him it’s hard for me to take him to the pool while I’m doing my infusions. I know he can’t process everything that I’m going through so I try to explain it to him in terms that he will understand. Even though these infusions are not nearly as hard as the chemo infusions were, they still upset my stomach and there are a lot of days that I’m just exhausted from them. Attempting to go to the pool is hard for me and it also breaks my heart because I know he wants to go. Hopefully this summer we will be able to go more with our friends.

When I talked to one of my doctors the other day, they said this is one of the longest cancers to go through because of all the treatments that you do. Hopefully, by the end of October, I will have the infusions completed. There will be numerous follow-up appointments with all of my doctors, but hopefully, the treatments themselves will be done.

As bedtime approached, he told me he was going to wake up at two so he could scream. I truly was hoping that wasn’t a prediction and he would sleep through the night. I asked him if he didn’t want to go to his grandma’s on Saturday and he said he did. I told him if he screamed at 2 o’clock in the morning and I couldn’t stay asleep he wouldn’t be able to go to his grandma‘s. I pray that he sleeps tonight. And I pray that I sleep tonight. He wanted lots of hugs and kisses before bedtime and he fell asleep very quickly. Follow your heart and make your dreams come true. Smiles to all and donut daze!

I’m not quite sure what woke up Owen at “two o’clock in the morning” as he said but at least he let me sleep as much as I could. He was very excited about his day and that he got to go to therapy. I was up off and on all night. Right now everything feels like something and the somethings keep me up.

He couldn’t wait to go to school so he could tell his teacher that his best friend would be there in August. This is now a conversation that will have no end. He is so excited about it and I’m so excited about it for him but I’m not nearly as excited as he is and I’m hoping it meets all his expectations. I also think about his teacher and the other staff. His friend could possibly be in another classroom, which I would completely understand either way and support their decision, but I’m not sure how Owen will like it. I know it will be a great learning experience for him either way and they will still see each other a lot since the classes work with each other.

He had a very busy morning and seemed to be going through a very hyper and loud stage. Inside voice is now a thing of the past. I try to lower my voice so that he has to concentrate more on what I’m saying but this doesn’t always keep his attention. The good news he has been very happy this past week and laughs all the time.

He is back to not wanting me out of the “white bed” in the mornings. He wants me to sit and not walk around. He is so much calmer when he knows what I am doing. He gets upset when I try to do anything different than the usual routine. We got dressed and he was ready to go wait for the bus. He saw the bus turn the corner and he asked me if he was going to see his teacher many times before he would even head towards the bus. Off he ran and then off they went.

I picked him up from school and he told me that his teacher would be happy because he tore the papers and he laughed and laughed. I asked him if he thought his teacher would be happy and he said, “No.” On our way to therapy, he told me that he was going to see his friend every day when school started. I once again prayed all his dreams would come true.

He certainly was confused as to what he wanted to do after his therapy yet knew exactly what he wanted to do. He said, “Therapy and then straight home.” After he said that many times he said, “Gino’s pizza please.” I asked him if he decided to go to the park and then get the pizza. He said, “Owen’s not going.” I told him that he was the one who said he wanted a pizza and he said, “no pizza today.” I said ok straight home and he said, “Take me by the blue church.” I said I thought you wanted to go straight home. He said, “After the blue church and pizza.” He told me that the Gino’s sign smiles at him. When he came out of therapy he decided he wanted to not go straight home, get Chick-fil-A, and drive by the blue church. It’s always an adventure.

On the way home he started laughing again about “now” and “verp.” I knew where this was going. He loves the school app they use and he is learning about nouns and verbs. He laughs because he likes to make the wrong choices on the app so he can hear the “boing” noise and says it extremely loudly. The louder the better is how it is starting to go for everything.

When we got home we ate our dinner and Owen got louder and louder as the night went on. I think it was partly to keep himself awake. He brought up all the videos and actions that he knows I don’t like. The more he talked, the more he laughed, and the more he thought of other things I wouldn’t like. He started throwing his teacher into the mix and telling me she would like it. I asked him if that was true and he laughed more, saying “no.”

The night concluded with him wanting to lick my head every chance he got even though he didn’t lick it once. He would walk up to me and stand up really tall to try to get to my head, once again laughing hysterically very loudly. It was an interesting evening and I prayed this would all translate to sleeping through the night for both of us. The talking was nonstop and the questions were even more. Nights like these are exhausting but his laughter keeps me going, even when the laughter comes from pure mischief that he is getting into. Celebrate your progress, be thankful for the moments of joy, and know that you are amazing. Smiles to all and donut daze!

The sleep trend continues! Owen woke up after five full of plans and excitement for his day. He told me that he wanted to go to the park and play his drum like Ethereal in E the musician we learned about the drum from. He was also making big plans because the guy likes to play his drum in the water so that has raised his drum goal level even higher.

He was hoping I wouldn’t hurt his feelings today and let him ride the bus home. He was still worrying about the change in his routine. He said he would go to the park, play his drum, and eat Tudors if he could ride the bus home so I knew how this would go… we will have to wait and see. He was happy and expressing his wants which made me happy. I hoped he would come home and want to go.

He also went through the days and schedule until he would see his best friend again. He was very fixated on my clothes. He asked me about outfits I hadn’t worn in a very long time and what I would be wearing today, next week, and at Christmas time. He told me he wants to have a concert at the park with his music therapist and night Santa. He has lots of plans and wanted to make sure I knew them all.

Some days I sit in the noise and just pray. It’s emotional for me to say it but the squeals that are repeated over and over even when in delight keep me on the edge of calm and anxiousness. I am thankful he is happy but when he squeals “he watches ice cream” repeatedly and expects me to have a response I wait for the delighted squeal to turn into screams that will lead to a meltdown. I don’t know what the correct response is to “he watches ice cream” except to say “It fell” because the bear dropped it. His expectations of me are endless and staying on top of all the words, phrases, and expressions I am supposed to know keeps me on my toes constantly. I’m thankful at the same time for where he is and how far he has come. The progress is my daily gift. I talked to him about his screams and emotions and he was able to talk to me about the screaming and how it is hard on him too. In no time it was off to school for him.

When he came home he wanted to go to the park. I was in shock. We headed out the door to the park. It was very windy and the cars distracted him but he had so much fun. He said, “Goodbye park we will see you tomorrow.” I think he will have a lot of fun playing in different places. Ethereal in E plays his drum in the water so that is his goal as well.

We picked up Chick-fil-A because once again Tudors was closed but he was thrilled about it and ate all of his dinner when we got home. He sat with me the rest of the night again after his bath. His teacher told me they had danced the Hokey Pokey and we talked about that. He then started saying the Pledge of Allegiance and I was amazed at how well he did with it.

Bedtime came and he was excited about going to school and therapy tomorrow. I am glad that he was very calm and happy about his day. He is growing up right before my eyes and I’m incredibly proud of where he is. I can’t wait to see what tomorrow brings. Follow your heart and let your dreams soar. Smiles to all and donut daze!

Some days are emotional to write about and hard to explain but the love is the best art of my day and the easiest thing to explain.

Another successful night for my sweet baby O. Owen slept until 5:30 proudly proclaiming once again that he “slept upper night.” He was in a great mood and had lots to talk about. August 15th and the 16th were once a big topic for discussion because he knew he would get to see his best friend on the 15th and since that is a Friday he will then see his grandma on the 16th. The dude is a’planner! And I hope all his dreams come true.

We discussed where he wanted to go play our drums. He was agreeing and disagreeing with going today even though he was the one who initiated the conversation. He told me who he wanted to come with us, and which park he wanted to go to, and what food he wanted before, during, or after the drum playing. He also wanted to have a concert with his music therapist at Christmas time at the park. The list continued with wanting to play for the horses. I will be happy if we do any of these.

I had to get the scissors out of the drawer to open a bag. I left it open because I was cutting the bag and then going to put it right back in the drawer. Owen got up from the table, walked around me, and closed the drawer. I saw him walking towards it, my heart skipped a little beat, and I waited for the scream even though I could tell it wasn’t going to happen. He is back to having a problem with drawers being open. My nerves are spaghetti sometimes waiting for the screams.

We went through years of screaming due to windows, doors, and drawers not being the way he needed them to be. He cycles through these meltdown triggers and I never know when they will start or stop again. I asked him if the drawer being opened bothered him and he said, “Yes don’t do it again.” That one statement had so much for me to unpack that it was almost too much for me to think about. We’ve moved forward without him screaming and that was my blessing for the day. You never know how many pins and needles you are standing on until one moment stops you in your tracks.

We got ready and we went to wait on the porch. He wanted to make sure I wasn’t going to disappoint him today. He never forgets a thing and this conversation could continue to come up years from now. He was referring to last Tuesday when I was at my infusion and my mom picked him up instead of him getting to ride the bus home because my appointment ran late. Even though he loved being with his grandma it was still a change for him and any and all changes are hard. I told him he would ride the bus home and I prayed there would be no reason for it to change.

I did not disappoint him because he got to ride the bus home. He was very full of information and requests when he got home. He also was very excited about going to McDonald’s, Burger King, and Tudors even though I told him we couldn’t go to all three in one day. He named everyone he could think of to go with him. He started telling me that he will be doing activities with his best friend when he starts school in August and he knows his teacher will be happy. The list went on and on. My little planner likes to plan activities for himself and others but it is the part of actually doing it that we haven’t gotten to yet. I tried to get him to go play our drums at the park but he stood right there in the living room and took his shoes and pants off. It’s the official “I’m staying home outfit” and you cannot change my mind. We stayed home.

I’m working with him on understanding how to follow directions. When I ask him to hand me something or bring me an object even when I say it is right in front of you or it’s by the door he still can’t always find it even if he knows what the object is. I work with him on how to take a few steps and then put his hand out to get it but these are all very confusing steps to him. We take it one day at a time, one step at a time, and I know he will get it.

“Chips in my teeth,” he said to me. I love it when he tells me things that he has observed or felt. He has now added that he is going to church on the 17th of August since he knows what he is doing on the 15th and 16th. He amazes me with all the details he remembers. He asked me if I had to go through the drive-thru to get medicine and I told him not today. It is something he never wanted to do years ago and now he asks every day if we can go through the drive-thru.

Nighttime came with rain falling. He asked if his grandma was going to pick him up since she picked him up from school last Tuesday and it rained. Never a detail is forgotten. He told me that when his friend comes to his school they will be together and every day he will say good morning to him. I’m thankful for my amazing dude and his heart of gold for the people he loves. I pray tonight for another night of sleep and his beautiful amazing smile to shine bright when he comes to see me in the morning. Celebrate your victories no matter how big or small celebrate them all. Smiles to all and donut daze!