More sleep was had for Owen and oh how thankful I was. I woke up early but went to bed early so I felt more rested and was glad he didn’t wake up yelling again. He was very hyper but very happy about it. He had a plan that included his grandma and he shared all the details as he requested his breakfast.

I should say it was multiple plans and he was seeing which one stuck as the morning went on. Meeting grandma, Dairy Queen, McDonald’s, Wendy’s, computer, tablet, and meeting mommy were all mixed in there. He randomly said a few other things and reminded me repeatedly that he slept all night. He did not want to miss the opportunity again to see his grandma.

He was much calmer as the morning moved on. He was repeating a lot of his words but that was him making sure that his routine that he was missing would be happening soon. He decided he wanted to go to Dairy Queen with his grandma so we met her there. We had lunch together and then he went to spend a few hours at his grandma’s house. He told her he wanted to meet me at Kroger. He has certain ways he likes to do things and when everything falls into place it makes him very happy.

I picked him up from Kroger and on the way he was already plotting the rest of the week. He wanted to go back to his grandma’s tomorrow, he has therapy on Thursday, and then he wants to meet his grandma at Bob Evans on Friday. Oh the mind of my sweet baby O.

When we got home he asked for a snack and gum. I told him that he could have both but not at the same time. He decided he wanted gum first. He took about a third of the piece of gum and threw the rest away. It’s interesting how small of a piece he wants. He chewed it until it was dinner time and I had to convince him to throw it away.

Bath time didn’t come quickly enough for him. I think we were still both tired from the last few days. The calm is where it was at for the evening and I was thankful. He didn’t want to go to bed right away but I convinced him that he needed to follow directions so could have his tablet in the morning. I’m not sure what we will be doing tomorrow but hopefully, we get a great night of sleep.

2024 has been a rollercoaster of emotions but I look at where we started and I’m thankful for how far we come. I embrace the new year with open arms and I am so thankful for walking into it cancer free. I know as I look forward to 2025 it is with my eyes open wide and the expectations of a great year. I can’t wait to watch Owen grow and I’m beyond thankful for each day I have with him. To live, to learn, to grow in the year ahead is exactly what I see for both of us. Follow your dreams and make the most of each day. Smiles to all and donut daze!

To say last night was hard is kind of an understatement. Oh, how my sweet baby O misses his routine. Owen was up by three yelling, turning on and off all the lights, and just upset with everything. I finally got him to calm down by telling him we had to read a book. Instead of bringing it to me he sat down on the couch and read it. Within a few hours, he had read seven books. Every time he screamed throughout the day I sent him on his way to read. I’m not quite sure why it worked but it did.

He wanted to go to his grandma’s house at three in the morning. The more I told him we couldn’t go in the middle of the night the more upset he got. My heart aches for the rough days. I kept telling him to go back to bed, he could even take his tablet if he would stop screaming. This didn’t go over well at all. I asked him to get into bed with me and just when I thought he would he heard a noise from outside and was screaming again. We haven’t had a night like this in quite some time. He has been awake early many nights but he was clearly upset and all my suggestions were not what he wanted to hear. The only thing that worked was telling him to read more books.

I got up several times to get him milk and food but all he wanted was to go to grandma’s. It was Monday on a break and that was enough for him to think he should be at his grandma’s house. I didn’t tell him yesterday he was going there today but he has gone enough times on a Monday that he expects it. I was hoping that not telling him it would help him sleep but when he has expectations already there is no stopping the train and he never forgets a thing.

He kept yelling, “Sit on a map” and then would say, “Not today.” This could have been something he did at school or a video he watched. It technically could be from anything that he has heard over the years. Sometimes when he tries to explain something his words are not always what he means. The word “map” could be about something completely different. When we go by this one particular area he always says that he sees a “lizard might be an iguana.” I am not sure if he is referring to the sign near there or maybe the fencing, it could be anything.

To say we were exhausted today is understatement number two. I pray he sleeps tonight. He wants to go to his grandma’s tomorrow and he keeps telling me he has to sleep tonight. As nighttime approached he was much calmer. He told me he was sorry for yelling at me and I know he struggles with all his emotions so I was thankful for his words. His laughter filled the night and I know it was him trying to stay awake but it still made my heart happy to hear. Be thankful for the good stuff. Smiles to all and donut daze!

Owen slept all night. I mostly slept. He told me immediately he would get to go to church since he slept all night. After he went through that he moved into saying good morning to me. He always says “How are you I’m fine” before he waits for an answer.

He grabbed his tablet as he told me he got to take his tablet to church because he had behaved. I hope that meant there was not going to be any screaming today. He went to play and over his shoulder, he yelled for me to get him some cereal and milk. He added please which I’m glad he is back to adding when he is asking for things. I talk to him about manners and giving people kindness and grace.

He knocked something on the floor and immediately started picking it up. This was huge. He squealed a little as he was doing it because he had so many emotions he was processing with that one moment but he worked through it without crying or screaming. I want him to understand accidents happen but it’s how we handle it that is important. He told me he picked it up all so he should get a reward but he didn’t tell me what he wanted the reward to be.

He was in a very talkative mood. He also told me that we were going to Bob Evans on Friday for pancakes. He was once again trying to fill his days up with other activities while he was on break. I was hoping this would all come true. He was deciding what days he thought he would see his grandma and the fish. He mentioned many restaurants that he thought he could get his grandma to go with him to. He was plotting but I loved all the things he was thinking about.

We got ready for church and when we headed out the door it was raining. Rain always stops me in my tracks because for years rain was so hard on Owen. I can’t even begin to think about how many times he cried, begging me to turn off the rain. Thankfully he has gotten through it and he was on a mission to get to church.

He did great at church and then he requested lunch before we headed home. The afternoon quickly turned into evening. He wanted to know what he was doing for the rest of the week. I couldn’t tell him because we hadn’t made our plans for every day. He stayed pretty calm throughout the day which was a huge blessing. He was back to wanting to lick my head again but he corrected himself and said, “Mommy doesn’t like that.”

There were a few rollercoastery moments but overall it was a good day. I’m thankful Owen was happy and we only have one more week to go before he starts back to school. He wanted to sit with me before bedtime and I love the conversations we have when he is making all the connections. Find what makes you happy, share your joy, and believe in the hope for tomorrow. Smiles to all and donut daze!

Someone was excited about his day. Owen woke up at about three and was in a very good mood but extremely hyper. He was talkative and went through all of his good morning sentences with me. He said them so fast that it was like one very long sentence though. I think he was trying to keep himself awake.

He is not easing into this holiday break at all and is ready to get back to school. He keeps checking to see when he will be going back even though he knows exactly when he will go back and what he is doing until then. He thrives in his routine and right now it is extra hard on him.

Thankfully his good mood continued all morning. He was still very hyper and asked lots of questions but he wasn’t screaming. When he wanted more food and drink he asked me very politely. I was glad that he wasn’t listening to me and when he would start repeating something it was easier to redirect him to something else than it was yesterday.

We got ready and I took him to his grandma’s house. He goes through all the steps. He wants to know whose turn it is to give directions and then he talks about me parking in their driveway or if we are going to meet his grandma in the parking lot so they can go on a ride. I told him today I was going to drop him off and pick him up. We have to switch it up or he gets very upset when we don’t do exactly as he thinks we should.

He stayed with her for several hours and then I went back to pick him up. As soon as I got there he started asking me when he would see his grandma again and I knew they had already discussed it. This again is one of those things that if we tell him too much information he clings to it but if it doesn’t happen exactly as he thinks it causes the ripple effect. He has a hard time living in the moment and is constantly days, weeks, months, and years ahead.

His grandma told him he could have whatever he wanted to get for dinner on the way home. He went back and forth but decided on Chick-fil-A. We passed one of his other favorite places and he said he wanted to go to both places. I told him we could only go to one and would have to go to the other one another day. He said grandma would take him to both. I told him not on the same day. He is always thinking.

We got home and thankfully he was still asking a lot of questions but the evening was all very calm. I’m hoping that he sleeps tonight so we can go to church tomorrow. He sat with me before bedtime and talked to me about the movie he wanted to watch. I took his picture and he said, “Watch me smile” while pushing his lips upward. I’m thankful for a better day even though we were exhausted. His smile is worth every moment. Smile and let the whole world see it. Always remember you are important. Smiles to all and donut daze!

Owen woke up after five and came to me, immediately starting to talk to me before he even got all the way into my room. All the words came pouring out of him, sharing so many details of days gone by. His smile made my heart explode with happiness. He wanted a ton of kisses on his forehead and smiled bigger each time I gave him one. He talked about being with his friends and wanting to go to see the fish. Sleep was better for me than it had been but I was still pretty tired.

Another premiere video was happening this morning and he was so excited. We had to go through setting the timer again and even though it had three hours he wanted it in five minutes. He still wanted to go see the fish but I wasn’t sure how the day would go. We ate our breakfast and he talked more about the video, seeing the fish, and going to Burger King.

The fish happened. He asked to go after breakfast again so off went. He enjoyed seeing the fish but he wanted to make sure Santa was gone even though he knew Santa was gone. He also wanted me to know about every one of the mannequins that did not have blue pants on. He told the mannequins too. After that, I took him to Burger King and he was happy we got it even though he only ate a few bites of it.

The rest of the day was filled with those rollercoastery moments. He wouldn’t stop asking the same questions over and over again. He rephrased them every way he could and there was no distracting him. When I would try to get him off topic he would stand a little closer and then scream or lick my head. Breaks are hard for him and he wants to make sure he is not missing a thing.

He doesn’t forget a thing so he went through all his days and everything that anyone has ever told him about the holidays. He was also telling me which days of the week the holidays were. He knew that New Year’s Day was the first and on Wednesday. He told me the fifth was Sunday and he goes back to school on Monday the sixth.

We had chicken Parmesan with spaghetti for dinner and he loved it but the whole time he was eating he talked about taking his bath. I told him he didn’t have to take a bath until later but he insisted on telling me about it the whole time. No matter what I said he was ready to take his bath. This got him in repeat mode again and I couldn’t distract him. After his bath instead of playing with his tablet he laid in my arms once again talking about all his days ahead and wanting his break over. It’s so hard on him to be out of routine. I pray as he gets older he will handle them better but right now my heart aches for these days when they are so emotional for him.

He fell asleep quickly, talking about sleeping all night so he could see his grandma tomorrow. I pray for sleep and I pray for the week ahead to go quickly for us. I have to focus on the good stuff. This morning was amazing and he was so happy. Let yesterday go and know that tomorrow is a brand new day. Smiles to all and donut daze!

Owen slept until almost six. I woke up once last night but otherwise slept better than I have been sleeping. He was still talking about going to Burger King for lunch when he woke up. He once again explained that they don’t have chocolate milk so he has to get apple juice. He wants to go to the park and then go get a pizza. He planned for a busy day.

There was a new West Virginia road video premiering from the series on YouTube he likes to watch but it wasn’t set to be available until nine this morning. He kept bringing it to me to show me the countdown so I told him we could set a timer so he would know when it starts. He pulled up the timer and he wanted to set it for five minutes but I told him we had to set it for an hour and fifteen minutes. He quickly moved the time.

He kept bringing me his tablet but instead was showing me the timer. He still kept telling me he wanted to go to Burger King but he made no moves to get ready to go to the park. Yesterday was a very busy day for him and quite overwhelming so I had a feeling that we would be staying home today and I wasn’t going to push it. His video finally premiered and he was so excited to watch the person driving around the streets of towns close to us. He ran through the house holding his tablet and jumping up and down when they would drive by something he wanted to see.

I asked him if he wanted to get ready to go and he ran and hid under his blanket. I started making our lunch at that point. He said Burger King one more time after I made our lunches. I told him we could go for dinner and he replied tomorrow. He was back to asking about seeing the fish tomorrow. I had a feeling that he needed the day at home to relax and unwind from yesterday and that was fine with me.

He ran up to me and said, “Octopus has nine legs no eight arms,” and he laughed. He walked away saying something over his shoulder to me about them having legs and arms. I started reading about the octopus and I have a feeling he knows a lot more facts about them than he was even telling me. Sometimes he will say the opposite of what he means because he likes to say “Are you teasing me” so that he can watch how the person reacts with the wrong information.

He wanted to take his bath very early and didn’t want to get out. The bath then turned into a shower and he still didn’t want to get out. He had been asking for a bath since he ate lunch so I cut his hair and then gave him a bath. He asked for me to dry his hair with the hairdryer but he quickly changed his mind because he didn’t want to hear the noise.

I made our dinner and then he asked for Burger King again but said tomorrow so we shall see how that goes. I’m thankful for a good day. He played his harmonica for me and then sang many songs. I love how much he likes music. Our night went quickly and thankfully he remained calm. We are clicking the days off until he goes back to school and he can’t wait. I’m thankful he loves school so much. Find what makes you happy, believe in your dreams, and know that you can do anything if you set your mind to it. Smiles to all and donut daze!

Merry Christmas! Owen slept all night. I woke up a couple of times. When he woke up he said, “Santa came” but then he wanted nothing to do with his presents. I said, do you want to open your presents? He said, “No you do it” and ran off to play. He came back a little later and looked at his stocking. He took one thing out and was off again.

I started fixing his breakfast and he asked me to put on my bunny ears. I told him I would when my head got cold again. I have started writing things out for him so he has to read it. This is helping him process how to handle things. For years it was so hard for him to look at cards or any type of schedule. He is only now getting used to it. I and so thankful and waited for this day to come that he would make the connection to the cards.

I was in my room doing a few last minute things. Owen walked in playing on his tablet. I was standing in his way and he needed me to move. He was playing one of his games and he had to go to a specific spot to hear how the floor creaks when he stops on the boards with his tablet held to his ear. He has to stomp three times and then moves forwards and backwards. He goes out of the room and comes right back to the same spot numerous times. He has been doing this for years but I’ve never been in the way. This added many more times to the sequence before he could move forward.

I had him finish helping me put the ornaments he made on the little Christmas tree we got for my parents. I love doing projects that help him develop his fine motor skills. After we finished I had him carry the other bags to the front door. He has a hard time picking up more than one bag at a time and he doesn’t know to grab both handles when he does it. These are the types of life skills I am trying to teach him to develop more independence.

We started getting dressed and I talked to him again about choices. I told him that he was getting to choose what he wanted to wear and his grandma had already told him what she was going to wear so he would be prepared. We talked about it all the way there. The minute he saw my mom he started having a huge meltdown. I went through breathing exercises with him and talked to him once again about knowing what she was going to wear but he was still upset. We kept pushing through the moments. My mom wrote down that he knew she was wearing her Christmas shirt and had him read it. After about an hour he calmed down and we had a good time. He was able to open some of his gifts with her help and he even ate some lunch with us.

On the ride home we had a few hiccups with the stoplights and the traffic. He started screaming about touching the door and made spitting noises. By the time we got home, he was calmer but kept screaming about touching the door. When we came inside he was calmer but still needed time to process everything. The night was full of emotions but thankfully he was able to enjoy his day.

Breaks in general are hard for him. He is ready to go back to school and his routine. He started planning his days ahead. Tomorrow he wants to go to Burger King, then the park and on the way home he wants to go to “Gino’s for a pizza in the drive thru mommy get a drink, not sweet tea.” Friday he wants to go see the fish and see his friends. What he says he wants to do and what he actually wants to do will probably be two different things but at least he is excited about the days ahead.

It didn’t take him long to fall asleep and I pray he sleeps well. I look at how far he has come and I am grateful. He used to not talk about Santa and scream if he even saw a gift so to hear his words is wonderful. He teaches me so much about being thankful for what we have and enjoying the moments with others who truly love you for who you are. Embrace the little things and follow your heart. Smiles to all and donut daze!

I woke up numerous times last night but thankfully Owen slept and let me know it. He was in a great mood because this meant he was going to “church church church” today. He requested his breakfast choices and started asking me when we were leaving. I told him it would be several hours. That wasn’t quick enough.

I took my hot tea and a banana and went to sit down. He followed me and was standing there waiting for me to eat my banana so I would throw the peel away. I told him I wasn’t going to eat it right away but he didn’t want to miss me eating it. The banana is one of those rollercoaster things in our lives. It has caused him so many meltdowns over the years and it took a team of people to help work through it with him. Now I get them constantly so we don’t backtrack with them but they still cause lots of emotions.

It’s been three years since I lost my brother around Thanksgiving but I still feel all the emotions around Christmas too. I wait to hear his laugh or see his smile. When your life changes around a holiday it changes you. I felt these emotions a lot when we were at our church service. The tears ran down my face sitting there thinking about all the moments I have missed with him and how many Owen has missed. All I can do is hang on to the memories and know that I am thankful for those moments we shared.

The blue saga hit him hard again today. I wish I had answers but it only leads me to more questions. His expectations were for all his people to be in the clothes he wanted them to wear but he becomes upset and emotional when they are not. I try to prepare him but he still hasn’t made the connection. I hate keeping him home but it’s days like this that make me question if I should. He told me he was sorry on the way home. I want him to understand that I get it upsets him but he also has to let people choose what they want to wear and learn to adapt to that. I pray it gets easier for him.

On the way home from church he told me that Santa is coming tonight but he won’t stay because he has work to do. I thought that was amazing and my heart was so full he made this connection. It felt like a huge victory in our Christmas season.

He was so excited that they finally replaced the broken stoplight. It has been hanging there for years like this and they finally replaced them all. It is something that he will still talk about and tell me how it has changed every time we go by it but to see his happiness over it was exciting.

Our night went quickly and he was very happy that tomorrow he will get to see his grandma. He was also excited that he would go back to school on the “sixththe.” Food, bath, and bed were the talk of the night. He wanted to go to sleep in my bed and me in his bed. I don’t know how my bed has become where he wants to be but I have to convince him it’s mine.

Tomorrow is Christmas and not so long ago he didn’t want to even look at a tree. Now my sweet baby O knows the reason for the season and why Santa comes as well. I pray each year for growth and I can see how far he has come. Here’s to a great Christmas and I have a lot to be thankful for and celebrate. It feels great to be cancer-free. Remember you are not alone in this thing called life. Your story is important and you are too. Smiles to all and donut daze!

I woke up several times for one reason or another but I was thankful Owen slept all night. We were on a mission this morning and he knew it. He was excited because he was going to see his grandma while I went to my doctor’s appointment.

Once he got up we had about an hour before we had to get ready to go. He asked me a lot of questions about his day but he was very calm about it. He remained calm but my mind tires when he repeatedly asked me the same question. If I ignore him for too long or try to refocus him it doesn’t always work. I know it is serious when he says, “Yes mommy” and keeps repeating that. At this point, if I don’t answer the way he wants me to he will have a meltdown and it is hard to get him back on track sometimes. I’m thankful when he stays focused and calm.

He wanted to meet his grandma instead of me taking him to her but I told him it was very cold so I was going to take him. He then decided that he wanted her to meet me after my appointment. I told him that it was up to grandma. He likes it when she takes him on rides. He wants her to take him to see the burger boy statue and drive by the railroad tracks. She agreed to take him by the railroad tracks since he behaved with her. They agreed on how many times they were gonna go around the block and wrote it all down so he would know. When he gets something in his mind and it doesn’t go according to plan he gets very upset so setting the rules beforehand helps him as the day goes on.

I try to remember not to say anything unless it is actually happening. Sometimes I will tell him things that I think are happening and if it doesn’t happen then he gets upset because of his expectations. It’s hard to explain to him. Life happens when you have something else planned.

I met them after their ride and we came home to eat our lunch. We had a pretty quiet rest of our day and then he sat with me before bedtime. He started talking to me about different things that were happening and what he wanted to do over the next week. He knew school started back on the 6th so he told me church was on the 5th and his therapy was on the “2ndth.” I loved how he was able to go backward with the dates and figure out what he would be doing on those days.

He handled bedtime like a champ tonight and it didn’t take him long to fall quickly asleep. Even though we had a couple of moments when he wanted all of his tablets at the same time and wouldn’t take no for an answer, I’m thankful for another good day. I pray for a great night of sleep and I’m excited about going to church for their Christmas Eve service. I have a lot to celebrate this year and I’m very thankful for being cancer-free. That was the best Christmas present I could ever ask for. Celebrate your victories no matter how big or small they are celebrate them all. Know that you are incredible and can do anything you set your mind to. Smiles to all and donut daze!

Owen said, “Good morning” and left it at that. He didn’t go through all his other phrases. I was excited about that and then I looked at the clock. It was heading into the six o’clock hour and I was thankful for the sleep especially since I had woken up a couple of times in the middle of the night.

He wanted to make sure sleeping all night meant he was going to church. I told him to look outside to see if it had snowed. I knew it hadn’t but I wanted him to look. Last night I let him know if it was icy or snowy we would stay home as well. I want him to understand that sometimes even if we want to do something we can’t always do it. Making these connections will help him with other activities we do. I hope that he will continue to understand how this affects his routine.

He started talking about taking his tablet to church. I answered him and then he asked again. I showed him the card I wrote out that said, “You know this.” He read it and started to walk away. I stopped him and when he looked at me I showed him the “You are amazing” card. He read it and his smile got really big. I always want him to know that even if we are struggling through a day he is amazing. Positive words and positive actions equal a positive life.

We got ready for church and he listened to everything I said. Our morning had gone fast. He had a few moments of extra questions but otherwise, he was very calm. He wanted to know about all his people. He gets so excited to see who will be at church. He has plans for them all and he is always hoping they will wear exactly what he wants them to. Right now it has been a little bit calmer for him about clothes but he still wants to talk about spitting on people’s pants if they are not wearing the correct thing. I remind him that we must share kindness and grace with all hoping this keeps him from spitting or being mad.

He was very calm on the way home. I didn’t look in the bag to make sure they got our food right and they left out his French fries. I should have looked. This is what I call a rookie mistake. He didn’t want to eat and talked about missing his French fries. He kept saying “have to get a new one.” Luckily I had bought a package of French fries so I heated them up and magically he started eating. He knew they weren’t the same but at least he was happy that he had fries.

He only asked me a couple of times about the days ahead. He knows he is going to spend time with his grandma tomorrow while I go to my doctor’s appointment to have my checkup after my surgery and find out my next steps. He was very happy about this. I am thankful for a good day and even though we didn’t do too much I felt like we made progress on his repetitive words. Remember you are amazing and your story is important. Smiles to all and donut daze!