To quote Owen we were “upper night.” He was handling his Friday and Tuesday but Monday is what got him up early. He was calm as the morning went on but he had to process it all.

Thankfully I had slept really well until then and I was feeling good today. It is so hard for him to get the part of it being a holiday and his routine will return as soon as it’s over but he has come so far with being able to not focus on the holiday. He was stuck on Tuesday instead and I know it is because he was working through it. He knew we weren’t going anywhere today so he said, “Grandma on Monday” and I told him yes.

He kept talking about watching a movie so I thought we would watch it together. It wasn’t the movie he wanted to watch but instead, the credits so he could see the castle flash across the screen with all the fireworks. I had a feeling it would last long and instead, his game won out but at least he sat with me for a few minutes while we watched the opening credits.

His main focus throughout the day was riding the bus home on Tuesday and if his teacher would also be his summer school teacher. I have explained to him that he will be having new summer school teachers now that he is older so he wants to know who it will be but I have no way of knowing that yet. He’s my planner and always wants to know what’s coming up.

He played two games he hadn’t played in forever. They are the longest games ever. He wanted me to play with him but there are very few things the game doesn’t do on its own so we wait through the game to play all the moves. He was so happy though and if he is happy that’s what matters. When he was little he would take my finger and put it on the screen to do the different actions. He has started doing that again but I tell him that he has to do it. There are some skills I don’t want him to go back to when he has come so far. I remind him he is amazing and he can do those actions on his own now.

He had been asking to take a bath since breakfast and I told him that after he finished his lunch he could. As soon as I said he could take one I looked at the weather and there was a storm coming in about fifteen minutes. I told him the storm is coming so you can take a quick bath now or a long bath later tonight. He said quick bath. He got in the tub and started telling me about the Gino’s sign that was broken and all the other things that broke during the other storms. He then told me he had to get out of the tub because of lightning in the pool. You can’t swim in the pool he said. He stores so much in that brain of his.

We worked on different math games and we read together. I know he was missing his routine already. Nighttime seemed like it was taking forever to get here for one of us but as soon as his head was on that pillow he was out. I’m thankful for a good day even if it started extremely early. Create memories, celebrate victories, take a walk in the rain, and believe in the miracle yet to come. Smiles to all and donut daze!

I slept better last night than I’ve slept in quite some time. I was feeling pretty good when I woke up and I was very glad the heat would be making its way out of the area hopefully soon. Owen slept until almost seven and was very calm and talkative when he did.

He asked about all the videos that he can’t see on YouTube. He finds videos that have broken links or are not showing anymore for one reason or another and then he goes through the lists of videos that he wants to watch but aren’t there. I have shown him videos of the same shows or characters but he wants to see the other videos. There was probably a noise or picture that he wanted to see again and a new video won’t show it the same way.

He was getting a little anxious about Monday being a holiday before he left for school. He didn’t mention Monday but he talked about riding the bus home today and Tuesday, then he went into detail about his Saturday and Sunday. I can tell he is processing it all in a new way and I see the progress he is making.

Off to school, he went. I got a message from his teacher with a picture of him doing art. He was so invested in what he was doing and painting his picture. I look back over the years and I can see the incredible progress. I’m so thankful for all the people in his life who believe in him. Encouragement goes a long way to create success.

When he got home from school the focus continued on his Tuesday and the videos he could no longer see. He knows he is going to school on Tuesday and riding the bus home. That is how he is processing there is a holiday on Monday. He was very calm about it though and he was talking to me about everything he did at school. He was happy and I was still thinking about his art.

We went to take his bath and he didn’t want to get out. “May I have five more minutes please,” he said. Of course, when he asks like that without me having to prompt him I will definitely give him five more minutes.

We were discussing the months ahead and we started talking about October. I asked him to tell me different things about the months. Anytime we talk about October he always mentions his friend because his birthday is in October. I love that he knows that.

As we were getting ready for bed he told me tomorrow was the “thirty-oneth” and then it would be September. Bedtime came and he was out quickly. I pray he sleeps tonight because I know he has a lot on his mind. I’m thankful for a good day and all the amazing changes he is making. Today is your day to celebrate your victories. Some days feel hard but remember how far you have climbed to get to where you are. Celebrate that victory. Smiles to all and donut daze!

The early bird catches the worm. I think that is what they say. I’ve caught enough worms I would like to move onto fish. I woke up somewhere around three and that was that. I wish I could sleep a little later but at least I’m feeling better.

Owen woke up after five. He told me “New school Tuesday.” I know he is processing having the holiday on Monday but this is the first time he has gone straight to Tuesday and processed it like this. He generally will repeat the same question about the days he has off or he will say it so many times I get confused that he is referencing the day that he has off and say something else. I am thankful that he is making this connection and knowing that he goes to school tomorrow, has Monday off, and then will be back at school on Tuesday. This connection and the way he is handling it shows incredible growth.

He was very calm all morning. He talked a little about my hair but he didn’t say it too many times. He reminded me again to remember to grow my hair and that I had a baby’s head. I love the references he has come up with but I’m so incredibly thankful how well he is handling it. He sometimes has a hard time looking at me but other times it is fine for him.

He listened great when we had to get ready and we went out to wait for the bus. He wanted to once again go the wrong direction and he then wanted to walk in the road but he listened when I told him we had to watch for traffic. He was off to his happy place.

He had a great day at school. His teacher sent some of his papers home that he has been doing and they were all great and showed so much progress. I loved the report he got today and I’m so happy how well he is working with the teacher and the aide.

I picked him up for therapy and the whole way there he was concerned about what his therapist was going to wear. I talked to him about all the different colors she could be wearing but his expectations were exactly what he wanted. He remembers so many details and it is hard when he gets focused on his expectations. Once that happens it is truly emotional for him and he can’t move forward. As soon as he saw her he wasn’t pleased that she didn’t have her blue scrubs on but she had her handprint shirt on that he liked. They went in and after a little bit, he couldn’t handle all his emotions and was crying so she brought him back out to me. My heart aches for him that we can’t find a way to help him process this. Some days he can handle it and other days it is just too hard. I pray that he will make the connection to his expectations and he will move forward with this as well. His therapist is always so caring about his feelings and how he handles everything.

Once we were in the car he calmed down and I talked to him about being upset because she wore something different than he expected. I said how should we handle this next time. He said, “Tell her sorry.” I was glad he made that connection but I also told him that we have to remember that people are allowed to make choices with what they wear and some people can only wear certain clothes while they are working. I try to reference that so he understands the different aspects of this.

He didn’t want to go anywhere or get any food today because he wanted to come straight home to get chocolate milk. He told me we would get a pizza on Saturday. He ate a huge fish dinner and was then ready for his bath. Nighttime came and he dragged along his blankets into his bed. His laugh shined through today as he giggled with all the translations he was asking Siri for. Let your heart laugh and your smile will shine. Smiles to all and donut daze!

Owen woke very early but was calm. I woke up a couple of times before him and fell back asleep only to hear him say “Tablet go back to bed” and take his tablet with him. He went back to his room and I went back to sleep. I see maturity growing in him.

I woke around five and started to get up and he heard me before my feet even hit the floor. “Back to bed,” he told me. I said I had to go to the bathroom. His reply was, “Then back to the white bed.” I could tell this morning was one of his thinking days. He was very calm so I was leaving the apples in the apple cart. Upsetting him can change the whole course of our day and I wanted him to have his time. I was pretty much in slow motion myself.

When I came out of the bathroom he started talking about our meeting today. I had told him yesterday that when he got home from school we were going to have a meeting with our program rep. That was part of the reason he woke up so early. He wanted to make sure that when she left he could change. He generally takes off his shoes and changes when he gets home if we don’t have something else to do. I told him that he could change as soon as she left and he was fine with that.

He only mentioned my hair a couple of times. He told me I looked like a baby, he wanted to touch my head, he said he could no longer pull my hair, and he wanted me to remember to grow it back. We addressed all of them and he didn’t bring it back up before he left for school because he was more concerned about seeing his teacher on Friday. I tried to remind him that he still had school today and tomorrow but he wanted to make sure about Friday. I know he is already thinking about Monday being a holiday so he is making sure as many days are routine as possible.

We got dressed and headed out to wait for the bus. His focus was completely on Friday. He asked a few more times about Friday and then he discussed crossing the street. I want him to understand the rules of looking both ways before he crosses. He has absolutely no concept that a moving car will not stop for him or move around him. Thankfully he listens to me when we are out but this is a life skill he has to understand. I can tell he is thinking about it because he brought it up and kept saying “Cross right here” pointing in the wrong direction of where he knows we wait for the bus. Each day I go over the steps so I know he will continue to think through it.

When he came home from school he knew our rep was at our house. The second time he saw her he told her what she was wearing the first time he saw her. It had been close to a year or so since he saw her at that point. This was one of the first times I realized that he probably could tell everyone he’s ever met what they wore every time he saw them. I knew he wanted people to wear certain things but this made me realize he stores all that information and now can tell me. Today he immediately went through what she was wearing and I’m sure this outfit was in his storage vault of a mind.

He did amazing for the meeting. He sat with us for a few moments, talked to her calmly, didn’t interrupt us literally every few seconds, and went to eat his snack all while being extremely calm. I had told her before he came home that she would be shocked at the difference in the way he handles situations now. He still has his moments, who doesn’t, but he is so incredibly calm now. And I’m beyond thankful for it. When she left he changed and he was happy.

The rest of the evening was filled with food, questions about Friday, and only a couple of mentions about remembering to grow my hair. I was honestly shocked at how little he mentioned it and once again so thankful for how well he is handling it all.

Today was one of those days that every time I zigged I should have zagged but I made it through the day. I was feeling better today even though I was more tired. I was able to eat more today and I was feeling stronger.

Hopefully, we both sleep better tonight and he has a great Thursday. I think about how far he has come and all the things he is accomplishing. I tell him all the time that he can do anything he wants if he sets his mind to it. And I truly believe that. Believe in yourself and the rest will follow. Smiles to all and donut daze!

“Haircut,” Owen said as soon as he walked into my room. He was on a mission. He woke up a little after six and the first words out of his mouth were “haircut.” We have been talking about it since I made the appointment with the cancer center boutique. He was ready as he ever could be for my buzz cut.

What a journey it has been to get him to accept hair change. It has been years in the making to get this far. He was very calm this morning and ready for his day. I woke extremely early and couldn’t go back to sleep but I felt much better and stronger. He was playing on his tablet but occasionally he would yell to me to talk about my haircut. I kept wondering if I had prepared him enough for what the afternoon would bring but all I could do was remind him that when he got home I would have my buzz cut. I had asked him if he wanted to go with me but it was all too much for him and I understood.

We got ready for the bus and went to wait outside. He was talking to me about my haircut and then he switched to making sure he would be riding the bus home. He followed that up by talking about the days ahead and which days he would be riding the bus and when he would go to therapy. He is back to the same conversations about his therapy days and bus schedule as he was last year. I’m going to see if his teacher has a suggestion or if there is a way that I can associate it with his schedule at school.

Owen took a minute to get off the bus. The aide said he was checking it out when he first saw me. When he got off the bus he said, “buzz cut.” He then asked me for one. I said do you want to go get one and he said, “Yes.” I asked him if he wanted it today and he told me not today. I knew he would need to process that too.

We walked inside and he still was taking it all in. He told me “It’ll grow back yellow hair.” He then said, “Blue hair please.” I told him I had bunny ears. I put my pink bunny ears beanie on and showed him the other colors I had. He asked me for blue, purple, yellow, and orange, all colors I don’t have. He asked me to touch my head and he said, “Soft.” He wanted me to wear the bunny ears.

I fixed his snack and he started eating it. He kept coming to check out my head and asked me to grow it out by Thursday. I told him it would take more time than that. I know he was trying to process it all. He told me to remember to grow it. He then started saying my head was “like a baby.” He continued watching the haircut video again and singing the song throughout the night.

There were only a few moments when he got a little elevated about it but otherwise, he handled it amazingly. I know it is a lot for him to process and in the days ahead I’m sure there will be moments we have to work through but to see how well he handled it my heart is full. Today was a victory and one more day toward healing in this journey.

He fell asleep quickly. I think middle school is wearing my sweet baby O out. Today was a much better day for me. I felt stronger again and I was able to eat more foods. I’m thankful for my amazing son and all that he has taught me. Focus on the good stuff. Your victories are coming and know that today is your day. Smiles to all and donut daze!

Last night was an interesting night for me but thankfully Owen slept all night. Elevated was the name of the game for part of the morning going in and out of being calm. He woke after six and immediately was on a mission to win the hats game he loves to play.

Once we got past the hats his focus moved on to all the schools he had been to and all the people he met. It is amazing how much information he retains and can go through. He is still processing the fact that he is now in middle school and wants to know if his current teacher will be his summer school teacher. I keep trying to get him to focus on today but he needs to process all the information and when it is happening. His focus is constantly moving forward as soon as his expectation for the day is met.

He was still elevated when we had to get ready to wait for the bus. He wanted to know if he was riding the bus home tomorrow when we hadn’t even walked out to wait for the bus today. I worked with him on trying to breathe through the moments. We got dressed and headed outside. When the bus came he wouldn’t get on until he checked to make sure he was riding home on the bus tomorrow one last time. I know that as much as he loves going to his therapies on Mondays and Thursdays it also is hard for him because it interrupts the routine of the bus.

When I picked him up from school his teacher said he had a good day. She went through a couple of things with me about his day and how she handled one of his moments when he didn’t want to do something. I absolutely loved her response and it was the most perfect way to handle the situation. I am very thankful that Owen has handled this transition to middle school so well and I feel like he is already processing changes in a new way.

We were off to his music therapy and he was having another group session. I love that he is getting to experience this. Owen always wants everything to be his choice so I’m thankful his therapist also works with him on his social skills. It is also nice to have time to talk to other parents who are experiencing some of the same things.

We went home for a little bit and then went to his vision therapy appointment. He did great with his exercises but he was focused on if she was chewing gum and what colors she was wearing. She let us know their office is going to change to wearing scrubs. They will be blue. We talked about this throughout the whole session and you could see him thinking about it and then we talked about it again on the way home as well. He repeated back about what she would be wearing and he seemed to be ok with it. I’m thankful for a doctor who cares so much and is working so hard with him to help him handle things like this.

Dinner blended into nighttime. His new nighttime routine is to ask Siri how to say things in all the languages. He asked how to say “gum” so now when he walks up to strangers and asks them if they have gum in French it will be even more interesting. Never a dull moment. Live life to the fullest and let those moments bring you the greatest joy you have ever felt. Smiles to all and donut daze!

I woke up several times last night but I felt the upswing coming. Or I was praying for it. Owen slept late and woke in the most fantastic mood. He walked through the house talking to himself and activated a couple of his toys. He came to me, got his tablet, and crawled into bed with me.

He wanted me to play his games with him and he told me all about them. Generally when I ask him questions he won’t always answer them or if he does he quickly answers, sometimes correctly, and then goes back to what he wants me to know. I always ask him what his favorite things are and this has been a difficult concept for him. I asked him which animal was his favorite in the game he was playing and he said, “The pig.” My heart exploded with joy. It was effortless and exact. The pig wasn’t even on the screen so he had to think about it and he answered with exactly what he wanted. These are the moments I have been waiting for. We sat there for a while longer and more victories were made.

The morning went quickly and he couldn’t wait to get to church. We got ready and we went out to the car. I talked to him about always making sure his seatbelt is on. I check that he puts it on but I want it to be one of those life skills I shouldn’t have to go over every time we get in the car. I emphasized how important he is to me and how important it is to use his seatbelt. I referenced the fact that if he doesn’t put his seatbelt on he will not be allowed to have his tablet in the car. I’m hoping that it works for this like it has with the repetitive words and actions. I know he can do it.

As we were driving to church he mentioned his friends and who he would be seeing. He started talking about his best friend that he doesn’t get to see anymore since he is younger and didn’t move up to the new school with him. He kept saying he hoped he would get to come to church with him real soon. My heart was so happy and sad at the same time. I wish his friend could come with him but I’m so thankful he knows how important church and friendships are. He did great at church and on the way home.

He had requested Burger King for lunch and ate it all. Later I asked him what he wanted for dinner and I started fixing it. As I was making dinner I asked him if he wanted anything else while he waited. His go-to answer is usually veggie straws. He asked for red chips in a red bag and then chips in a red bag. I asked my mom but he hadn’t tried it at her house so I’m thinking maybe this is something he has tried at school. I’m sending a note to school tomorrow and maybe she can help with the mystery. I will be excited to get him something he has requested.

The laughter and songs continued throughout the day. It always feels good to have a very happy sweet baby O. He only had one moment that was tough for him. He asked for a bubble bath and I went to get it ready. I turned on the shower to make more bubbles before he even came into the bathroom. He heard the shower and he started instantly screaming “No shower.” His hands went to his hair and he started stomping his left foot. I told him I was making bubbles but he would have to come and see. He hesitantly walked towards me but once I showed him what I was doing then he couldn’t take off his clothes fast enough and into the tub he went. It’s those moments he can’t connect his expectations with what is happening that he has the hardest times but thankfully he quickly recovered, enjoyed his bath, and was very calm for the rest of the night.

Today was a very long day for me. So many little things happened and some big ones too but thankfully I was stronger today and my stomach wasn’t as bad. This coming week if it was like before I should start feeling better with food for most of the days. Owen was very excited when he went to sleep for his busy day ahead. There is no greater joy than seeing my sweet baby O succeed at being amazing. Let yesteryear go and know that tomorrow is not written in stone. Write the story of your dreams tomorrow. Smiles to all and donut daze!

I woke up a couple of times last night but thankfully I slept until after five. That felt like an accomplishment. I heard Owen get up and go talk to his alphabet caterpillar in the living room around six. He was walking back and forth in the room talking to some of his other toys. I love hearing him so interjected.

He came to me about ten minutes later and said a quick good morning like it was not even two words, asked for his tablet, told me to stay in the “white bed,” and ran off to play. I have been giving him time in the mornings to do what he wants before we do any of our routines. I think it is helping him to be calmer and have his time before we get our day started. I do love the days he wants to snuggle but I can see with age they are not as many as they used to be.

Breakfast ran into second breakfast and third breakfast. It seemed like he ate pretty much all day and is definitely growing again. He knew he wasn’t going to see grandma today and he decided he wanted to stay home. I had asked him a couple of times if he wanted to go to the park or somewhere else but I think he needed a day to just put his feet up and enjoy his day. And boy oh boy did he bring on the laughs.

I love how much he is exploring all the languages again. He sat asking Siri to translate words and phrases into numerous languages. I think I laugh as hard as he does when he hears the responses. Sometimes the words he says are not the same as what she translates and his little belly gut laugh takes over. It then makes him ask for even longer sentences and it all goes from there. He is now saying more of the words and then he laughs even harder. I love his pure joy from hearing the words.

He was watching a video from the Small Potatoes about haircuts but he was listening to it in Spanish. He started dancing around the room singing along with the video and threw himself on the couch laughing hysterically. I have been talking to him about me getting a buzz cut on Tuesday because my hair is falling out more so I know he is processing it and doing so incredibly well with all of the changes. I love that he can make these connections and I’m thankful that he has an understanding of what is happening.

Bedtime came and he talked about going to church tomorrow. He can’t wait to go and see all his friends. I’m thankful that he has such a close relationship with so many people who love and adore him. It didn’t take long for him to fall asleep and I kept thinking about that big toothy grin as he laughed throughout the day. I’m thankful he is still finding a way to work through the repetitive words and he has become so much calmer.

It was a better day for me. I’m still having a hard time with food but if it went like the first infusion the week ahead should be getting much better. I’m thankful for so many things and the blessings I have in my life. Seeing Owen enjoy his day made today bright. Live today with all your heart and let tomorrow be your guide for a beautiful future. Smiles to all and donut daze!

Today was more about quiet time. Owen slept all night. I was thankful for that. Luckily all the noises didn’t wake him but they sure did me. It was like one of those movie titles Trains, Semis, Sirens, and Alphabet Soup.

Somewhere around two, I heard a train and a siren or an alarm and I was awake. Then from the living room, I hear one of Owen’s toys halfway singing its extremely slow version of the alphabet, clearly needing new batteries. I went to turn it off hoping that not only did the toy not wake up Owen but I was hoping me going to turn it off would not as well. From there, no sleep was to be had for me but I was so thankful he slept.

He woke in another great mood, singing another song I couldn’t completely hear and maybe was the same as yesterday. Today however he wanted his alone time. He came to get his tablet from me and he ran off to play, telling me we were both going “back to bed.” He’s growing so much. I love that he can express more of what he wants now. I would have loved another morning like yesterday. I completely understand his need to have time to settle and wake up before he heads off to school.

The laughter is what I hold onto. I needed that laughter and I love it when he gets so tickled that he bursts out in these belly-gut laughs. He was watching something on his tablet and he started giggling so loud. Without him being in front of me I can imagine the grin he has on his face and it makes me giggle as well.

He listened well this morning when we needed to get ready for the bus. He wants to wear shorts every day now instead of jeans and he isn’t mentioning “blue pants” as much as he was but instead coming up with whole outfits that he wants everyone to wear. It amazes me how many people he can remember seeing for the first time and knowing exactly what they wore or what outfit he liked best that he saw them in at some other time. I wish he could tell me all the things he has stored in his mind.

He was off to school and I knew it was going to be another great day for him. When he came home from school he was talking about the bus not going straight and was a little more elevated about directions but he stood there and watched it drive off and go around the corner. He loves watching the buses and his excitement for them continues to grow.

We went inside and I fixed him a snack. I gave him a few minutes but I could tell today was more of one of those thinking days. He needed his alone time and I once again understood. He would occasionally come sit with me to help him use the voice-activated option on YouTube to find a video but then he would run off again to play. Snack time completely ran into dinner time which then was immediately bath time. He barely finished his dinner and he was requesting his bath. Bath time was not something he wanted to make quick either. I figured that was how the day was going for him. I had to remind him several times not to drink the bath water. I still can’t quite comprehend how he will drink bath water but hates to even think about it when I give him regular water. I guess it’s like chicken in his toes. we pick our battles and one of us usually wins.

Today was rough around the edges for me. Food was extremely hard for me so I pray for a better day tomorrow. It’s hard going from a person who loves almost everything to not being able to eat much of anything. And I miss food but I know that today is one day and I am in it to win it.

Nighttime came quickly and he was asleep quicker than I think he wanted to be. His head was on his pillow and he was out. I think middle school might be wearing my sweet baby O out but boy oh boy am I proud of how incredibly well he is doing. Today is the day to do what you love to do. Dream big and make that dream come true. Smiles to all and donut daze!

Today is one of those days I have waited for, longed for, and knew in my heart would happen. Owen slept late and wanted to come “lay down in the white bed” with me to play on his tablet. When he woke up he started singing a song I think about a monkey swinging in a tree. I couldn’t hear much of it but I thought it might be a song he learned at school. I was soaking in all of the moments with him.

He put his head on my shoulder as he played his game and he wanted me to ask Alexa for different animals in numerous languages and then he started repeating them. I always wonder how much he comprehends or if he likes the sounds of it. I do know that he has so much stored in his mind and I can’t wait until he shares it all.

He was in such a good mood. He was playful and interactive, telling me all kinds of things without saying the wrong things. He told me exactly what the objects were and then he said, “Thank you for telling me” like I say to him when he is explaining something. I always want him to know his words are important and when he shares them with me it makes me happy.

I cried all morning with the happiest of tears. It was so beautiful to see all the connections he was making and how he interacted with me. I have waited years for these moments and I feel so blessed. When his smile shines there is no better moment and when his heart is filled with joy I know there is another miracle waiting to be seen.

I wore jeans to pick him up and even though he still wants everyone to wear blue pants he was shocked I wasn’t wearing a dress. He handled it beautifully though. His teacher said he had another incredible day at school. I am so thankful that he has handled this transition so well and I can tell how much his teacher and aide work with him already. One more blessing.

We headed to therapy and he talked to me the whole way. He was talking to me about random things and he waited as I answered back. When we got to therapy he sat patiently while I talked to his therapist. Both his therapists said he had a great day and was very interactive with them. He wanted to get a pizza on the way home and drive by the statue and burger boy. I told him since he had such an incredible day that we would do it all.

He had a great night and was incredibly calm. The laughter and song that filled the air made the day complete. I believe in my sweet baby O so very much. I believe in the miracles yet to come. And my faith is strong in what will happen next. The day for me was better than yesterday but my focus was more on the beautiful changes in the most amazing boy I know. There is no greater gift than believing in someone else but always remember to believe in yourself. You are a miracle. Smiles to all and donut daze!