Any and all changes disturb the routine of our lives and for Owen, this is extra hard. Cancelling his therapy this week was a decision I didn’t make lightly but knew that I would be extra tired with my last few days of radiation. However thinking through that decision was why I overthink everything. Owen was up around two wanting to make sure he was still going to school today. I confirmed it but back to bed was not an option because I had to confirm it for the next few hours as well.

I have been working with Owen on his school words and other words he is struggling with. He says “next ear” instead of “next year.” There are a few letters he still struggles with to say the sounds but he has come so incredibly far and I remind myself that the doctors told me he might not talk. I had to believe he would and I made sure he believed it too.

We got ready for the bus and he started naming all his previous bus drivers. He was asking who would be with him over the summer and I told him I wasn’t sure. I got him a couple of new pairs of shoes and even though one of them was blue he will still need time to process them. We went out to wait for the bus and he was so excited when they turned the corner.

When he came home from school I thought it would be the plumbers that were here working on the never-ending plumbing problems but no it was the grey pants that I had on. He hasn’t had a meltdown like this in a very long time. He screamed at me, bit my pants, spit on them, went to the bathroom to get water in his hands to put on me, yelled at the guys to tell me I was wrong, and the list went on. My heart aches.

The guys were here for maybe an hour. I finally got Owen calmed down enough so he wasn’t screaming anymore about twenty minutes before they left. At this point he told me he was sorry many times over. I told him he also needed to tell the guys he was sorry for yelling at them to leave. He told them “Sorry guys” and they were both kind to him.

He was still talking about my grey pants though so I asked him if he wanted to wear shorts. He said yes. I told him that he would not get to wear shorts or a bathing suit if he only wanted everyone in blue pants. I went on to say he would never get to go swimming again if he couldn’t wear a bathing suit. This is when the tide began to turn. He wants to go swimming so not wearing a bathing suit will be a huge deal to him. I’m not sure if it will cure the blue pants thing but just maybe it will get him to realize he has to be kind to others about what they wear so he can wear a bathing suit. At this point, I am grasping at straws to try and help him make connections with it. This has been going on for five years and it hasn’t wavered.

He repeated over and over that his teacher would be happy and his Grandma would be happy that he took deep breaths and calmed down. It is always hard when someone comes to our house for Owen. But it is even harder for me when he is having a meltdown. People at our house disturb his routine and it is hard for him to overcome it. He asked me what they were doing here and when they were coming back all night long.

The night was filled with swimming suit talks, wanting to know when he would see his teacher again, talking about his mentor at school eating a banana, and when he was going to see his best friend again, plus needing to know when the plumbers were coming back. I was thankful he was calm and I pray that he sleeps the whole night through. He told me “My laugh is funny” and did his amazing fake laugh. That’s what life is all about. Focus on the good stuff and the rest will follow. You are amazing and can do anything if you set your mind to it. Smiles to all and donut daze!

One of us slept and one of us didn’t. Thankfully Owen slept all night but I was up and down. I will be so glad when the week ahead is over. Four more treatments for radiation and I will be done. Next up will be my infusions but they are not nearly as intense for me even though they are longer treatments.

When Owen came to me he went through all of his usual things. He said that he “slept upper night” but he went through many versions of it. Next, he wanted to make sure we were going to church. I tried to explain to him that he slept but I didn’t and I wasn’t feeling very good. His “church church church” chant rang loud and clear. Then he wanted to make sure he was going to see his teacher and all his “frands” saying it in his most southern accent. I tried to reassure the best I could.

I showed him on Google Earth where he would be going to high school. He was talking about going to high school because he was a big boy. Hopefully, it is the school he will be going to but it is still at least two years away. He was stuck on the week ahead. It will be hard for him not to go to his therapy but he kept telling me he was riding the bus home so that is how we got to talking about his high school and he was all about figuring out where he was going to summer school and who his teacher would be.

He went through what each person may or may not wear at his school. He went through all his friends and the staff. He specifically told me what they might wear this week. I am sure he knows everything they have ever worn before.

When we left for church Owen fell on our steps. He said, “Pay attention you were paying attention.” He got his knee and the sides of both ankles. We went back inside and wiped it off. He was ok and still wanted to go to church. He told me when we got home he wanted to take a bath to get rid of blood. He wanted a bandaid on his knee but immediately took it off. I’m thankful he handled it so well and they weren’t that bad.

He told me that he wanted a “new big black car.” I asked him why. He said so he could go to the post office. I found this more amusing because there is only one post office that I have taken him to that he didn’t have a huge meltdown in. This was the big discussion back and forth from church.

He told me he is celebrating his birthday again on Friday. I wonder if he thinks he is going to get to have a party every week at school. At least I know he enjoyed it. That makes me very happy.

Bedtime was quick. He got his bath and told me his knee was all better since the blood was gone even though it was gone when I cleaned it earlier. Hopefully, the healing will go quickly for him. He was ready to go see his teacher but hopefully, he will sleep tonight. I’m glad he had a good day besides his scrapes. Here’s to a great week ahead. He sat with me before bed and his laughter warmed my heart. Let happiness be your bright spot and share your smile with the world. Smiles to all and donut daze!

Owen woke up very early and then he wanted to make sure he was going to see his grandma. He asked me over and over and over again. His world has been turned upside down by all the changes in his life but that’s what life is all about, changes. Any and every change is something to him. It can be something like having to go a different way than he was expecting or major changes like my hair. These changes are not things he will ever forget either so it is more about finding ways to help him cope with all the changes and working through them with him.

He was ready to go to grandma’s and I was ready to sit. Every time I thought he was going to let me fall back asleep for a little bit he started talking about going again. It’s been so hard for him the last few months. Being sick and then having all the snow days completely turned him around. Those moments in time sent him into extra anxious moments. As soon as he gets off the bus on Fridays he is checking to make sure he is going back to school on Monday. I can tell they are working with him about his spring break coming up. He has been counting the days of when it starts and when it ends.

My heart hurts knowing that spring break will also be hard on him. I pray and I pray some more that by then he will want to go more places. It will be a long week if I can’t get him to go do any activities. I am trying to show him different places we can go. He used to want to ride his bike but since we got his new one he won’t even ride it. He says he wants a tricycle so when we move I want to get him one.

He walked up to me and read what I had on my nightgown. He said, “coffee.” I said how many coffee do you see. He said, “Four coffee coffee coffee coffee.” These are the moments I am reminded of when the doctors told me he might not talk. And I told them all the same thing he will talk. Every single day I tell him he is amazing and can do anything he sets his mind to. When he was little he would scream all the time. I would tell him I know he can use his voice and he can ask for what he wants. I wanted him to know I believed in him and he could do it.

We got ready and I took him to his grandma’s house. It was around noon before we went. Between pure exhaustion and the rain, I waited to take him. He had a great visit with his grandma. She wore “new blue pants” and she said he talked about her wearing the “wrong ones” but he didn’t scream at her so that was progress.

When we got home we ate our dinner and he talked to me about watching eyeballs. He always wants to talk about teeth and eyeballs. He loves watching videos about teeth and he found videos of people that have contact lenses. I don’t want to watch any of it and that makes him laugh even harder.

I never know which elephant to look at in the room. I try to ignore them all and focus on the good stuff. That can be hard some days but I try to not let the challenges of life outweigh the goodness I see. My sweet baby O’s laugh is one of the many things that makes my heart happy and tells me it is going to be fine. Find happiness in the quiet moments, joy in the loud ones, and gratitude when you lie down at night. Smiles to all and donut daze!

Today was both a hard day and an incredible day. I have a teenager and I am so excited to see what the year ahead brings for my most amazing sweet teenager O whom I will always call my sweet baby O. The changes and connections he is already starting to make are wonderful.

He proudly “slept upper night” and came to me asking when he was going to school. I started talking to him about his birthday and he wanted none of it. I still moved forward. I had to do it for me. I sang him happy birthday and told him how much I loved him. He moved on quicker than I did and was ready to talk about something else.

We got ready for school and went out to wait for the bus. He was so excited to get on the bus. I had talked to his teacher in front of him about having pizza or snacks for his birthday but I didn’t keep talking to him about it. He is going through a stage where he only wants to do what he wants to do and everything else is too overwhelming. His teacher made his party happen.

I could not have asked for a better experience for him. I knew that every time I had tried to tell him what we could do for his birthday he said no and didn’t want to hear anymore about it. It’s hard for me to know that planning a party for him is not something he can handle right now but beyond thankful that he could have a party at school with his class and he loved it. That is the joy I’m holding onto.

His teacher sent me pictures and told me the stories that I hold close to my heart. I know that his love for school, routine, and consistency are what he needed for his birthday. My wants and needs for a different kind of party are because I want to give Owen exactly the magic my mom did for me. She made everything special. To know that he had a great day, wore a birthday pin because he wanted me and his grandma to see the pictures, and that he wanted to tell everyone he is thirteen made my heart sing. And it is his birthday so he should have exactly what he wanted.

When he got home he told me so many things about his day including the fact that he had a party at school. He told me he ate “cupcakes kinda like a muffin.” He then told me he had a pepperoni roll which I know he had pizza and he said something orange. He also said there was music and too many people in the gym because they were loud. He then said that they were going to have a lockdown drill and he was going to pull the fire alarm but was not going to the Special Olympics on Monday. He got a lot of the details correct and a few of them close.

When he came in from school I asked him what he always wanted to do with mommy’s phone. He said you can’t add Toon Blast to mommy’s phone. I said whose phone can you put it on. He said Owen’s phone. I pulled it out of my pocket and he said Owen’s phone. I showed him how to open it and he immediately went to the Play Store and Toon Blast. His grandma got him a new phone for his birthday. He played with it for a few minutes but he won’t let it out of his sight.

He had told me he wanted to order food but I think that became overwhelming for him so I fixed him his favorites and maybe we will order tomorrow. He had two goals for the night to talk about taking a bath and seeing grandma tomorrow. I told him he could take a bath and he could see grandma tomorrow but before I said anything else he said if I sleep upper all night. He then went into saying it multiple ways trying to get the wording right.

My sweet baby O is thirteen. It is the most amazing feeling to know he has grown so much and is thriving. I know the year ahead will be another beautiful story to our amazing journey. I can’t wait to see where it goes. Never give up on the hope for tomorrow. The challenges of yesterday make the victory of tomorrow that much sweeter. Smiles to all and donut daze!

Early bird catches the excited Owen ready for his big day. He was ready for all his things today and couldn’t wait to get going. He woke sometime around three but he was happy he was going to school and his therapy. I wish we could sleep later.

He told me every one that “sometimes does not wear blue pants.” He told me he wanted to go to Tudors for dinner and wear shorts. It is still a little cold for shorts in the morning or so I think but it doesn’t stay cold long so I know he would be fine. He was off to school. He was excited about therapy and thought he was going to Tudors. I told him we would see how he handled his day but otherwise, we could go if he had a good day.

“Dult teeth,” he said. He went on “Do not break your teeth what’s going to happen do not chew on your tablet that’s going to hurt your teeth ouch.” He wasn’t chewing on his tablet or even having it in his mouth but he went through every conversation we have ever had. He told me his “dult teeth” are all in so no more “pirate tooth fairy.”

I picked up Owen from school and got him to therapy. His teacher told me he had a good day but was processing that she moved his seat. She moved him so he could see better. He had lots on his mind. I didn’t wear my bunny ears because it was hot. He was not impressed with this. He told me all about school again. It was mostly about the people and bananas. He said, “toothbrush toothpaste Bluetooth” as he was trying to turn on the Bluetooth on his tablet. I love how his mind connects the dots. He told me that it was everyone’s choice to wear what they wanted so I was hoping it would be fine with his therapists.

He told me he was going to Tudors today and then he said this McDonald’s, pointing in the opposite direction. I told him that “we could go somewhere if” and left it hanging to see what he would say. He said to be kind to everybody. He decided to go to “this Wendy’s” as he calls it. It’s the one closer to our house.

His therapist said this was the best session he has had in a very long time. She said he didn’t repeat as much. The clothes were still a focus but he was able to move forward. It was great to hear. She said the other therapist said he did good as well.

He said that he was going to “middle summer school” at a new school. He is making so many connections. He was very excited about going to school tomorrow, coming home, and doing nothing for his birthday except maybe eating chocolate cupcakes. He is talking about ordering dinner but hasn’t decided on which place.

I will have a teenager tomorrow and I can’t believe but feel so fortunate. He has come so far and I tell him all the time he can do anything he sets his mind to it. I’m so thankful cod my sweet baby O. Celebrate all your victories and know that you are amazing. Smiles to all and donut daze!

Owen proudly claimed he “slept upper night” and he did. He was very calm and ready for his exciting day. I seem to sleep but never get enough.

My appointment got canceled because their machine broke. It was not what I wanted but here we are. I tried to focus on the good stuff, but I was very disappointed that I wasn’t having my session. I figured it was more time to give my skin a rest.

We got ready and he was telling me all about what he was going to do today. The bus was running a little later today and Owen was handling it, but he kept asking me where the bus was and what he was doing. Once they got close enough we went outside. He saw the bus come around the corner and he was excited.

Owen was happy happy. He was trying to confuse me by telling me everything incorrectly. He was going through the exact same things and I told him he had to say something new. He told me that the aide at school was eating a banana and he got to throw it away. He laughed so hard. I’m not sure if it was true but he was so excited about telling me. We talked about the banana a little more and he moved on to videos he can’t watch because they haven’t premiered yet. He was talking about so many days ahead and in more detail.

When he was taking his bath I stood there crying and he started laughing. He said, “Love laughing” and I knew he was doing it to try to make me happy. Today was emotional for me and there are so many things going on. He did make me smile and I’m thankful that he is seeing so many connections in the world now. I tried to focus on the good stuff and let everything else go.

The rest of the night went quickly and he wanted to sit with me until he was ready for bed. I can’t believe in just a few days I will have a teenager. Each day is a gift and I’m thankful for his laughter that got me through the day. Share your laughter and know that it will make somebody’s day. Smiles to all and donut daze!

Owen woke somewhere around four. He was beyond excited about seeing his doctor for his wellness check but even though he was excited that still threw off his schedule. I slept about as much as he did.

We got ready and went outside to wait for the bus. He was jumping up and down when he saw it turn the corner. He was off to get his day started. He was very excited about it. He has been plotting his days and what he wants to do. He is very anxious about his birthday on Friday. It is throwing him off. He is happy about his birthday but it is a lot for him to process.

I’ve asked him a couple of times what he wants to do for his birthday and he says stay home. He tells me he wants to order Bob Evans but that might even change. Each day is interesting what he says he wants to do. He keeps telling me he wants chocolate cake so that will be interesting if he does. I will be excited to see if he likes having his birthday celebrated at school.

He got home from school and he went through all his moments. He told me that he was upper night. He wanted to know about a video he couldn’t wait to watch but it hasn’t premiered yet. He was very excited to get to see his doctor and couldn’t wait to see what she was wearing. He wants the nurse to come get him. He is also excited about school tomorrow and no more field trips. He went through it all.

We got to his appointment and he was thrilled when the nurse came to get us. She was very interactive with him and he included her in everything he was doing. He is 57 inches now and went down a little in weight 77 lbs. He was so excited to see his doctor in “blue scrubs and new blue shoes.” She said he was still small for his age but looked good. He was able to follow directions for her and was extremely excited that she looked in his mouth which he opened very wide, his left ear first, and then his right ear. She had asked him which ear he wanted her to look at first. He was able to touch his toes so she could check his spine. I love how much time she spends working with him and talking to him.

We got home and he wanted waffles for dinner and a long bath he told me. He can’t wait to go to school tomorrow and I am thrilled I only have six more appointments for my radiation. I go on the 26th for my follow-up with my chemo doctor and will start my infusions soon after that. Nearing the finish line and I am very thankful. He did his fake laugh for the nurse and it made my day. Celebrate your victories no matter how big or small they are celebrate them all. Smiles to all and donut daze!

Owen slept all night. I got some sleep but it’s never enough. He was very much ready for his day and he wanted me to know he “slept upper night.” He asked me numerous times what the day held even though Mr Calendar Head Man can probably tell me the date of everything he has ever done and everything he is going to do.

He told me that he is going to see his grandma on Saturday and that she will be wearing blue pants and a button shirt. He is still processing it all. I feel like he will still be upset when he sees her again but at least he will be calmer if she wears jeans. He wanted to make sure I told him he could go but I told him I wouldn’t be sure until Saturday and he said if he “slept upper night.”

He knows he is going to see his doctor tomorrow and reminded me about the appointment. His calendar in his head is always clicking off his days. We got dressed and my happy boy was off to his exciting day knowing that he was going to music therapy and his vision therapy after school.

His teacher said he had a good day and his music therapist said he was very calm. She said the boys both worked well together. The whole way home he talked about how he was going to ride the bus home. Originally I thought his appointment was earlier so I told him I would pick him up from school. He told me “Mommy made a mistake.” He was both happy and wanted to make sure I knew.

“Bubble hand bite your finger sore hand,” he said as he was taking a bath, showing me how his hand was going in and out of the water. He wanted to make sure I knew he wasn’t supposed to bite his finger. I told him that was correct. I told him he knew that hurt his finger. He is making a lot more connections.

I am blessed. I remind myself of this every day. I’m trying to tell myself that I have to keep moving forward and know that I’m in God’s hands. I see progress in myself even though I’m my worst critic but I see even more progress in my amazing sweet baby O. I’m thankful for where he is now and I’m praying he sleeps again tonight. The interactions mean the world to me and that laugh he does is absolutely amazing. Focus on the good stuff and let it be your motivator for a better tomorrow. Smiles to all and donut daze!

I forgot about the time confusion. I can never remember if I’m going to be tired or extra tired with the time change. I think Owen woke up early but I am not sure because I was focused on the new time and he was very focused on getting on with his day.

He knew what the plan was and he wanted to stick with it. Church, grandma’s house, and thinking about the following week were on his agenda and he wanted to talk about it a lot. I went over and over with him that his grandma would not be in the outfit he wanted her in but I also knew this would not stop him from being upset when we got there. I told him that her pants were thrown away and she wouldn’t be wearing them again. I know it will take some time but we have to stick with that plan. The plan is emotional for all of us and it is lots and lots of crying, screaming, and processing time.

We got ready for church and he was excited because our friends were going to be there. He couldn’t wait to see them. He did well at church and was ready to go to his grandma’s house when we were done. I went over the same things again with him before we got there. We picked up lunch and off we went.

He cried for about an hour and a half. He wanted her in her outfit. He screamed a little but we had to push through it. We distracted him with lots of questions. My mom asked him, “What does the letter of your teacher’s name start with?” “T,” he said, “for teacher,” I asked him what he wanted for his birthday and he said cake. My mom and I both looked at each other. He eats very little sweets for us so it is always interesting when he says he wants something sweet.

He calmed down and still interrupted anytime we tried to talk to each other but at least he stopped crying. He told his grandma he wanted to come back on Saturday. They discussed the outfit she would wear and he seemed to be fine with it. I’m hoping that he will let go of these pants quicker than the black shoes I had to throw away years ago.

He told me they had changed the color of the paint on a building he loves. He always points out that the inflatable duck I loved at the spa store was gone and he says, “It flew the coop” mimicking the words I say about it. We got home without him getting upset about anything. It was wonderful.

When we got home he sat at the table, listening to ringtones on his tablet and “laughing for me.” He doesn’t want to listen to my phone ring unless he wants to hear my phone ring but will play all of the ringtone sounds on YouTube on his tablet. He finally ate his chicken and fries. He enjoyed them. He told me he wanted to add a game to my phone. I said he couldn’t because I have no room left on my phone as he said the same thing. He said to add the game to “Owen’s phone.” I said you don’t have a phone and he said, “Owen’s phone please.” The teenager is coming out in him already.

He told me that he is going to his grandma on Saturday. I’m going bye-bye, she is wearing blue pants and a button shirt, and he is eating cake which is interesting because he doesn’t like to eat a lot of sweets for us. He told me he was upset but better now. He said, “No screaming cry like a baby was upset.” He was processing it all and going through all the moments.

He told my mom that peanut butter was his favorite thing he eats at school which is hilarious to me because I can’t even get him to eat it on crackers and I’ve tried it so many other ways. I will have to ask his teacher if he ever eats it. He said he wanted chocolate cake for his birthday on Friday and peanut butter. He is thinking through all of it.

The rest of the night was quiet. He listened at bath time and he was asleep very quickly. Even though it was hard watching him cry there was huge progress made. I’m thankful for that. He is ready for his week ahead. On your hard days remember your best days and let them be your guide to a great day. Smiles to all and donut daze!

Owen slept until a few minutes after six. I’ll take it. I was up by five but slept almost five hours straight so that was good. I told him we were going to see his grandma tomorrow after church if he slept all night. That was the plan and I stuck with it.

He said, “Play-Doh in the toilet what’s going to happen tablet gone be a good boy no Play-Doh in the toilet” and then he went through what could go in the toilet, laughing the entire time he said it. I pray he doesn’t stick anything else in the toilet. I already have enough plumbing problems as it is.

He was playing on his tablet and he said, “Turn it up Mommy ya right,” laughing hysterically and then continuing to tell me he was going to turn up his tablet. I wish his tablet had a way of limiting the volume. It does for headphones but not the regular volume and I’ve never found an app that works for it. He finds having all the noises being very noisy very comforting. I on the other hand would like to find the off switch occasionally to all the loud noises.

He said, “Twirling my hair don’t break your hair” as he was twirling his hair. He hasn’t been doing it nearly as much as he was so his bald spot has mostly grown back in. I try to explain to him that certain actions he does will hurt his body like biting down on hard objects like his tablet or biting his fingers when he is getting emotional leaving huge red marks on them. I know that is how he can process things or when he is stimming but it still hurts his body. I want him to be aware of it so that we can work on it and find other alternatives that won’t be as hard on him.

He was laughing a lot with me. I love that he wants to laugh for me. He was laughing about the panda both losing and winning to the giraffe. He likes to lose more than win because he finds it amusing when the characters do certain actions. I am fine if he loses if he doesn’t know the answer or can’t master the game but he does it a lot when he could win but prefers to lose. I try to explain to him that he shouldn’t try to lose or answer things incorrectly but he laughs more. He does this type of thing when he isn’t playing games and that is what I am more concerned about. He tells the wrong thing on purpose when he knows the answer. He will then answer correctly after you correct him.

He kept talking about his birthday. He first said he wanted to go to Dairy Queen and have a burger for his birthday. Then he said he wanted to come home after school and have Bob Evans delivered. He will get it figured out by Friday I’m sure. My boy loves talking about food and the apple doesn’t fall far from the apple fritter.

He was calm until he wasn’t. He wanted to make sure all his days ahead were accounted for. He talked about his birthday a lot. My momma’s heart aches. I want to plan something fun for him but even the thought of going out to dinner was causing him to stress out. His routine means more to him than going places that aren’t part of his routine. He talks about going to the occasional place here and there but then it makes him happier to drive by his favorite statues or go home. I have to focus on the good stuff.

Today was emotional for me. The screaming when I don’t answer right away or if I don’t answer him each time he repeats something can be hard. This is my baby, my most amazing son, and he’s screaming at me because I was taking a sip of my drink and couldn’t answer that he was going to school on Monday for the thousandth time today. And I wish my math was exaggerated. I can only imagine what goes on in his mind. My heart aches for everything he deals with constantly. His laugh gives me everything. Enjoy the little things. Smiles to all and donut daze!