A million times is probably exaggerating but it felt like I woke up a million times last night. The nights seem to be the hardest for me. Every noise is a noise, every thought is an overthinking thought, and every pain is a magnified pain. But Owen slept. That’s the glory in it. When he sleeps at least I’m waking up on my own body’s terms and not waking up on both of our moments.

He was as happy as a lark that he slept all night. He was full of those words I long for and the emotions I crave. “I slept upper night,” he said with such enthusiasm. He quickly followed it with “Good morning Mommy” and my favorite “I love you school school school.” I took the “I love you” for me and him telling me how excited he was to get his day started but he may have been telling me how much he loves school. Either way, it was wonderful.

We had a busy morning. He was very hungry. He asked me several times to give him different foods. I love that he now asks for things he wants instead of me giving him what I think he wants. His food choices are expanding as well. I have always made him try different things but now he is asking for foods that he never liked before.

We got ready for the bus and he asked me if we could go to the park and then Tudors for dinner. I knew where this was heading but I played along. I told him that we could and he said, “No stay home.” I however didn’t tell him that his plans may change and that as much as he would like his new plans it might be hard on him. I had my infusion today and I never know if they will run long. The backup plan was his grandma would pick him up if it ran long. As the day wore on I knew the answer to that question. He was off to his exciting day.

I went to my appointment. I had to get lab work and see my doctor before my infusion. When I got to my infusion they told me that the doctor requested more drugs and it was going to be four extra hours. This meant Grandma would be picking Owen up. He loves going to see his grandma and I knew he would be happy but it would also be hard on him because his routine is so important to him.

He was happy to be with his grandma. He had lots of questions for her and was confused as to why his day was different but he was handling it. She said he had a lot of fun playing on the computer and ate several things with her. He asked to go drive around before they came to pick me up.

When Owen and my mom picked me up he immediately told me “You hurt my feet.” I said I’m sorry I hurt your feelings. He said, “And my foot” but is now saying feelings. My mom said he had so much fun at her house but he wanted me to know he was “disappointed” that I didn’t tell him she was picking him up. I told him I didn’t know until I got there I was going to have to stay all day. He told me “Next time know.”

When we got home he said, I have the “pee pee dance and have to go.” Off he ran to the bathroom. He said, “Stay home on Wednesday” and then told me he wanted to go “see the fish and Santa” tomorrow. He requested sausage dogs for dinner and kept screaming that he wanted to take his bath. I told him that he could take a bath as soon as he finished dinner. He said he was finished before he even ate.

Unexpected is the expected and today the unexpected meant more time at my infusion but I’m thankful to have number three done and one step closer to the finish line. Owen told me “slep all night” so hopefully we all will “slep.” Thankful for his progress each day. He sat in bed with me before his bedtime and he told me “I love you.” This is always the highlight of my day. Each day is a gift. Focus on the good stuff and let the rest go. Smiles to all and donut daze!

What a difference a day makes and oh how thankful I am for it. It was a much better night and a great morning. I think Owen was processing yesterday and understanding more of what happened. He told me that we can celebrate Mother’s Day next Sunday. I explained it was like birthdays that come once a year. He told me “Celebrate Sunday anyway.” He was very calm and seemed to be well on the mend.

He spent some of the morning playing his drum and talking to me about his day. He told me that he was going to music therapy and that he had to do his exercises at vision therapy. I reminded him that his focus did not need to be on his doctor’s clothing or gum and he said, “Do the exercises.”

After going in circles yesterday with both of our emotions circling through my mind Owen was much calmer about the events of yesterday and able to express some of his own emotions. I was thankful for that. He told me “Happy Mother’s Day” without me asking him or prompting him in any way. He mentioned that my birthday could be celebrated another day and told me I could have donuts. I feel like some days he gets stuck in a moment and he can’t let go of what he is thinking about. He was so upset at one o’clock in the morning that it just kept trickling down to all the hours of the day. Once his mind settled he could think about everything forward again. I always tell him we have to keep looking forward. He said to me “It’s forward Mommy” and I know he was thinking about today.

I didn’t tell him but his grandma was going to pick him up again to take him to music therapy. In case something had to change I didn’t want him to get upset if she wasn’t there to get him. My mom said he did great at music and when he was with her. I was thankful for that win for the day.

She brought him to me for his vision therapy appointment. He did much better today. He still was laser focused on his doctor having gum but at least he was able to concentrate on the exercises. He read with her and was able to say the right answers the first time around on most of the things which is a huge deal. It was a big difference from the last few weeks.

We came home and he was talking about all the things that were not going to happen mixed with the things that were going to happen. It’s sometimes hard to follow through all the stepping stones that are sometimes minefields that lead to meltdowns. He can say the wrong thing constantly but when I say the wrong thing once it is screams like no comparison. I tried to keep him on track of what he was doing tomorrow and I’m also reminding him that we have already talked about it so he knows the answer.

Tomorrow I go for my third infusion out of eleven. The last three weeks have reminded me that I’m thankful for being on this side of the journey. These infusions are nothing like the chemo infusions but they still make my stomach feel like it is on a rock n roll tour followed by the lack of sleep that tour provides. But oh how blessed I am to be one step closer to the finish line. Yesterday was a reminder to continue to look at the good stuff and tomorrow it is by the grace of God that I am where I am in this journey.

I’m thankful Owen slept all night and I pray for that repeat performance tonight. He once again fell asleep in my bed but I was able to get him to go to his. He keeps telling me he wants my bed so we will see where that leads. He is ready to be in school all day tomorrow and tell his teacher that his friend will be at their school in August. Oh, what a glorious day that will be for my boy. I’m thankful for his smile and a much better day. The challenge of a hard day is letting it go, being brave to face the next day, and knowing that you can thrive after you survive. Smiles to all and donut daze!

The screams echo through my mind still. Owen woke up by one and the screamfest began. I didn’t even disagree with his plan. I let him have his tablet and I told him that if he went to his room he could have his dream day. The screaming continued all night long. My emotions were right there with it.

I’m not quite sure how it spiraled out of control but two, three, and four o’clock in the morning were all the same and too much for him. He was still in a mood at that point and I just cried. This was not how my day was supposed to go. It was Mother’s Day and it was my birthday.

He told me last night that we “celebrate Mother’s Day.” I could hear his words all week as he prepared for the day. I could tell they have been working with him at school on saying it and what it meant so I truly thought he would say those words even when he woke up at one. I even thought he might say Happy Birthday. A few weeks ago he was talking about celebrating his birthday again and I told him mine was on the eleventh. He talked about it almost every day and the closer it got to the eleventh he brought it up more. He even figured out they were on the same day.

I tried to explain to him all night long if he let me sleep we could still go to church but he came into my room every few minutes asking to go to church, not understanding or listening that I was saying we could go. All he heard was me requesting the screaming to stop so the screams became louder. I think I will petition the church to have a Saturday night midnight service. He would be overjoyed.

It’s funny he went to bed so easily last night and wanted to go to bed. I was completely exhausted all day and he was beyond exhausted. He was yelling to keep himself awake as the day wore on, walking around the house talking to his friend’s pictures, and telling him what they would be doing at school next year. He can’t even keep his eyes open when he is standing yet he wants to go to church and then grandma’s house. I reminded him that we were both too exhausted to go.

“Santa will be coming soon he will be coming soon he will bring me presents on fire truck caterpillar come early,” these fine thoughts and many more danced through his sugarplum filled head. He wants another green caterpillar with the right letter legs this time. It’s a toy that they have made for years and he wants a specific version I have to see if I can find. Then he has been watching Santa videos and expects him to come to bring him presents from the truck with Ms Claus. Oh boy that will be an adventure.

It was an interesting day. He had a lot on his mind for sure. He got his second wind numerous times throughout the day and kept asking to go to church and grandma’s. I asked him if he knew why we weren’t going and he said, “Because screaming” so he technically gets it but from there he isn’t able to process it.

Lots of prayers got me through the day. The screaming was hard last night. Screams travel. It makes me anxious. That’s hard to think about. It makes me sad that he can’t comprehend how hard it is. When he was three it was one thing and it was still never easy but at thirteen no matter how you slice it it’s hard. My son is amazing but today he not once said happy Mother’s Day or happy birthday after knowing it last night and working on it for weeks. I try not to think about it and instead concentrate on the good stuff but it’s still emotional.

It was a long day. He wanted to be with me but he was incredibly loud using his voice to keep himself awake. He fell asleep in my bed but I was able to get him into his. I pray for sleep tonight and more of an understanding for him tomorrow. He has come so far that I know he will get this too. And today we both missed our church family and being able to spend the day with my mom. The tears fell today even though I tried to make them stop. Tomorrow is a brand new day and that is what I’m trying to focus on. Look for the silver lining and turn it into gold. Smiles to all and donut daze!

What a day. Emphasize on what a day. My dude talks a lot on an average day but when it is a Saturday that you should be at your grandma’s house and you are sick you talk even more. And you pretty much talk from three o’clock in the morning until bedtime happened.

Owen woke up early checking to see if any of his plans had changed for the weekend. Fever and snot were still in the game so I had to see what his temperature was before I let him know if his weekend was going to change. At least there had been no screaming. I know it is hard for him to not have his day go according to plan. Even though he understands he is sick he doesn’t understand why he can’t do what he wants. I tried to convince him to go back to bed but he did not like that idea. Our morning started. Thankfully his fever stayed down but I still wasn’t going to tell him we could do something until it had stayed down.

As I was fixing breakfast he wanted to show me all the things he knew I didn’t want to see and was laughing hysterically about it. He loves watching videos about eyes, pulling teeth, and other dentistry things. He wants to see me squirm when he shows it to me. I talked to him about remembering when someone tells you they don’t want something to happen it is not polite to do something like this.

This trend continued while he ate his lunch. “Spookley the Square Pumpkin don’t do it wrong that’s not funny in Arabic,” he asked Siri to translate it into Arabic. He then kept going through things he thought were funny and asked Siri to keep translating them. “It’s not funny it’s gross it’s disgusting show eyeballs get in trouble,” laughing the whole time he asked for this time in German.

My mom sent us lunch from Cracker Barrel. He ate chicken and dumplings, carrots, and roast beef for lunch. I got the dish that splits the main dish so it had meatloaf and chicken and dumplings, so we had the meatloaf for dinner. He ate the hashbrown casserole and carrots with it. He liked the meatloaf a lot. His tastes are definitely changing and growing.

“May I use the babysitter’s computer ask her,” he said to me as he was trying to stay awake. Oh, how I miss the days when he slept great. I pray we get back to that. I turned on the hot water to steam the bath before I filled the bath for O. I turned it off but didn’t push the plunger down for the shower. I have had my shower now.

“Good night sweet boy,” he said as I was walking out of his room. We had already said our prayers and talked about tomorrow. I always said to him “Good night sweet boy” and he was waiting to hear it again. It was the second good night round for the evening. He however was exhausted because he didn’t get out of bed to have the second round in the kitchen or my bedroom instead he had me come to him. I pray he sleeps tonight and his fever doesn’t return. If it stays gone we should be able to go to church tomorrow. He knows tomorrow is Mother’s Day. They worked with him a lot at school. He told me we have to celebrate and I hope we can. I am exhausted but feel blessed that what Owen has wasn’t worse. His laughter made my day. Let the blessings make you know today will be your day. Smiles to all and donut daze!

Well, Owen slept most of the night, took directions about going back to bed twice without his tablet, and was pretty calm, but he was very excited that he was sick so we could go see his doctor. I gave him some medicine but he was warm and his temperature was staying around 100. The snotty nose thing was also happening. He was making burping noises on purpose but I think it was to clear his throat. I was thankful we got through the night without any screaming.

Yesterday when we got home he wanted to sit with me for most of the night. I knew something was up. I was hoping he wouldn’t get sick but I was not surprised by it with his actions. He had his plan early and he knew what he wanted to do. He wanted to go by the burger boy statue, see “my Penny,” and then go to get lunch from the place he never eats all his food from. He was however very sad that he was not going to see everyone at school.

He talked all morning about Christmas and wanting to see all his people. He couldn’t wait to see his best friend and what activities they would do. He also wanted to know when he was going to eat with all his church people. All of these moments were peppered in between wanting to know when he was getting to see his doctor.

We got ready to go see his doctor and he started realizing he could not have his cake and eat it too. He wanted to see his doctor but he was sad that a fever meant he couldn’t see his grandma as well as not going to school. He was processing it all though. I never wait to take him when he is sick because the quicker I get him on medication the better it is for him.

We were in and out very quickly with his doctor. He told the nurse and his doctor that he could handle a shot because he knew it would make him feel better. They both told him he wouldn’t have to get one though. Even with her not wearing blue pants he handled it well. She had black pants and black shoes that we both called very dark blue jeans. She called in some medicine for him and I was thankful.

He was in a good mood for the most part but still not happy that a fever was going to ruin his Saturday plans. He only ate a bite of his chicken nuggets but all of his fries. I asked him why he always wants to go there and he told me he likes their fries so I told him that he only has to order fries when we go there. He was very happy about this.

He was asking Siri to translate into other languages all the things related to what he missed at school and what he thought they were doing. His best friend was next and reminded me he would be at his school in August. He reminds me of this every day and might be a little excited about that. He was talking to the picture of his best friend and said he would see him in August.

We were getting ready for bed and he told me he couldn’t go to his grandma’s house because he has a “beaver.” He stood in the kitchen saying his prayers with me and then heading off to bed. Within minutes he was back in the hallway “Dear God thank you for Owen Owen wants new orange headphones Amen.” This was news to me and this was his first of many times to get back out of bed. He came to my room and stood there with his eyes barely staying open, talking about everything to get out of going to sleep. He finally pointed to his room and I said it’s time for you to go to bed. This was his sleepy cue and he got in bed.

I’m thankful for him remaining calm on a day that I know was a lot for him to process. I am praying for him to sleep all night and for the medicine to work quickly. I saw big progress throughout the day and I’m thankful for a wonderful doctor that cares so much for my son. Today he let me wipe his nose each time I said I needed to. Another big win. Never give up on the hope for tomorrow. Smiles to all and donut daze!

It was an early morning for us but when you have a lot on your mind you want to go go go and he needed to be awake. Thankfully there was no screaming though but tablet time was what he wanted. He let me sleep a little longer. I was too tired to try to convince him to go back to sleep. I kept reminding myself at least he stayed calm.

He was off to school with even more things on his mind. He couldn’t wait for his day and to do arts and crafts with his best friend in December. He went into great detail again after telling me several times over the last few hours about sharing their supplies and working together on their projects. I love how he was thinking it all through.

His teacher said he had a good day. He talked to me calmly the whole way to therapy. I didn’t take his tablet with us. I’m trying to work with him on conversations and when to use his tablet. Or maybe I’m working on me and when I should be giving him his tablet hoping it will help his behavior. He knows he has to behave if he wants his tablet tonight. As much as I think he has a lot from his tablet I also think he needs to regulate himself when it comes to using it as well. It will come though. He was plotting all the things we would be doing after therapy and then of course he said he wanted to go straight home.

He only had one session today but he talked a lot about what his therapists would be wearing next week. I told him to focus on today. He said, “Thank you for following dewreckshings” emphasizing each part of the word “directions” in his little southern accent. He went back to wondering what his one therapist would be wearing today. He did well at therapy and wanted to go by the bridge flags and a church in our neighborhood for his reward. He likes the reflection in the windows.

I talked to him about focusing on good behaviors instead of bad behaviors. I asked him if he could tell me what good behavior was and he said, “You have to listen” and he followed it up with “No licking someone’s head.” I thought that was great that he was able to go through both sides.

He mostly listened on the way home except telling me how to run a light. He has plans for all the stoplights and he doesn’t want to stop at any of them. He planted himself in my bed as soon as we got home with his tablet and that’s that. He keeps telling me he is getting my bed so I guess he thinks he is taking it over. He was under the blanket making it like a fort. It was barely afternoon and he was yawning so that is good but hopefully, it translates to sleep all night.

He took his bath and usually, I have to tell him it’s time to get out. Not tonight. He jumped out of the bathtub and said, “I’m done.” It felt like more progress. His allergies seemed to be in overdrive tonight so hopefully he will be feeling better in the morning. Sleep happened quickly and I pray he sleeps all night. His laughter is absolutely the best. Be joyful and follow your heart. Smiles to all and donut daze!

I woke up numerous times last night but at least I slept more than the night before. And Owen slept until after five. If I had been quieter he probably would have slept later. He had a few concerns about the bus and if he was staying at school but otherwise he was very happy. It is always interesting what his focus is when he wakes up.

We had a busy morning and he ate lots of food before we got ready. He was happy to be going to his happy place. Boy, oh boy, I am glad he likes school. I can only imagine if it was difficult to get him to go how hard the mornings could be but he couldn’t wait to get out the door and watch for the bus to come around the corner. He asks me every day who his bus aides will be in August. I keep telling him I have no way of knowing. He loves all his people.

When he got home from school he had a lot to say. He was so happy they went in the right direction with the bus driver. He immediately told me that “Tuesday the bus driver went the wrong way too much traffic today right way.” He came in and he played his drum for a few moments before he went to change. Then he told me his pants got stuck even though he had them in his hand. I’m not sure what happened to them. He hasn’t stopped talking about seeing his friend last week. He was sitting next to me, holding my hand, and told me that he would see only one of his therapists tomorrow and then stay home. He also asked when he was going to dinner with his people. And this was all in the first twenty minutes of him being home.

He was so excited that his friend would be at his school for Christmas. I’m not quite sure why he has that on his mind but he is happy because he will get to do art with his friend and they can share scissors and a glue stick unless he gets to have his own. Oh, how I hope all his dreams come true.

He went to play his drum again and then came to talk to me about all the behaviors he was not supposed to do. I keep telling him we need to focus on the ones we should do. He added that he might wake up at two in the morning and “what’s going to happen” he asked. I told him let’s not worry about it because he knows that he can look at the clock and stay in bed until five. He laughed. I breathed.

The night went quickly and he pointed out that it was too bright to be nighttime. I was impressed with his connection and being able to explain it to me. It took me many times to convince him to get into his bed but once he did he was out. We both prayed for him to sleep all night and I sure would like to get some extra sleep. I’m thankful for his amazing connections today and how far he has come. Each day is a gift. Use it for the beautiful day it can be. Smiles to all and donut daze!

SIX AM! Owen slept until six! I woke up more times than I can count last night for more reasons than I can explain. He was in a great mood and wanted me to know he couldn’t wait to see his best friend at his school in August. He told me he was going to look for his car and he couldn’t wait to eat lunch with him. I love that he was able to share this all with me.

He was also back to plotting his time to see all his people and when he could go with them to Bob Evans. He told me again he wanted to see his doctor because he missed her. This dude loves his people fiercely and it makes my heart happy to know he cares for so many people. All morning long he was talking about his best friend. The smile that washes over his face when he talks about him is amazing.

We did some more exercises working on his fine motor skills and then we got ready for school. Before he left he played his drum. I left it sitting on the couch and he was playing it with the sticks. When he first woke up he went straight for it and played a few before he went to get his tablet. He loves it. We went out to wait for the bus and he talked about seeing his teacher. He did one more check with me to see if I knew who would be his bus aide next school year and then he ran to get on the bus.

Every little thing can be something. When the bus brought him home they came the opposite way they normally come so he was not thrilled. He wanted to go after the bus in his wagon that we don’t have anymore because he was too big for it. He told me he wanted to tell his counselor about the bus going to wrong way. He also asked when he was going to dinner with everyone. His social calendar is interesting. And then he wanted to make sure they hadn’t canceled high school like they did summer school and that his friend would still be going to his school next year. It was a busy first hour of him being home.

My brain can’t process it all sometimes. The phone has always been one of those up and down challenges with him that produces a lot of screaming. Since my cancer diagnosis, I have gotten tons of phone calls and tried to answer them all because of my appointments and doctors calling. I answered a phone call and that sent him through the roof. It took him quite a while to calm down from it.

He asked me to take him to get a pizza and then to Burger King. I said do you want to go and he said, “No.” I had an event that I was supposed to be going to at the cancer center but between him being upset and my stomach I decided not to go. I asked him if he wanted to go meet people to see what he would say. He once again said, “No.” I thought I could take him with me for a few minutes and go but I knew it would be hard to take him at this point. My mom was going to watch him for me but he was not budging about going anywhere.

He was attached at my hip most of the night and sat there holding my hand while he played on his tablet asking me questions. The night stayed pretty quiet after that. I pray tonight is another night that I can say he slept all night or at least I can say I slept most of the night. I’m thankful even on the rollercoastery days that he can now express more of his feelings and his needs. Let your heart be happy and share your joy with the world. Smiles to all and donut daze!

So close yet so far away. I tried the same tactic as yesterday and today’s answer was to go back to screaming. I’m thinking about getting a vault for his devices that can’t be opened until five in the morning. It’s always interesting. He is very ready for his day as he knows it. I wish the screaming would be taken off rotation.

He only had 30 minutes to go before it was 5 o’clock and he refused to go back to bed. The screaming is the hardest part and I knew he had a busy day ahead. He could hardly keep his eyes open yet he wanted to stay awake to look at his tablet. I hope that he can reflect on what we’ve talked about and tomorrow he will not scream at me if he wakes up early again.

We got ready and went out to wait for the bus. I didn’t tell him that his grandma was going to pick him up for his music therapy in case any of our plans had to change. I knew he would be thrilled, even though he would question why I didn’t tell him. My mom said he did great at therapy and while he was with her.

I met my mom and Owen at his vision therapy so she could drop him off to me. He did so much better today. He still talked about the gum but no screaming, no licking, or anything like that, just a lot of gum talk. He was able to complete multiple exercises. The funniest thing was his motivation. The only way he would do some of his exercises was if I promised him I would take him to see his doctor. He was happy as a lark and not sick but wanted to tell her he felt better and he missed her. He was much better. I’m beyond thankful for that. We picked up dinner on the way home and he was eating that.

My mom sent us both tongue drums and I showed them to him after he ate. He played it with and without the sticks. He was very excited about it and played it very enthusiastically. We will enjoy them and I know play them together.

It was off to bedtime after his bath, and I’m thankful for a much better day, even though it started a little rocky. I can see so much progress and growth in him. I’m glad that he’s able to express himself more and that in the long run will help him with making even more progress. His smile makes me smile. Look for the joy, enjoy the moments that make you smile, and know that you can change the world. Smiles to all and donut daze!

Sleep happened for the most part. I always wake up at least once during the night. It was a little rocky to get Owen to bed but not bad. He woke up at 4:40 and came to me to get his tablet. I told him that it was not five o’clock and if he wanted to go to church today he had to leave his tablet and go back to bed until the clock said five zero zero. He screamed and I said one more scream and no church. He put his tablet down, stayed in bed until after five, and then came back to me to get his tablet.

I told him I needed a few more minutes before I got up. It was about twenty minutes before he came back to ask for milk and I was getting up at that point. Huge progress! I’m so thankful he was able to gain control and go back to his room. I know twenty minutes to him is an eternity. It felt like a huge victory. I was glad it was only the twenty minutes but for him to even do that was incredible.

He had two things on his mind going to church and then going to grandma’s house. That was his chant for the morning. He came to me every few minutes asking when we were going to church and if I had texted his grandma to see if he could come to her house. I already knew he could but I wanted him to be able to understand the process of needing to find out.

He wanted to have a campfire at grandma’s house but I told him I wasn’t sure because the wood might be and he said, “Wet” before I could even finish. Then he said, “Text her so I can go to grandma’s house.” I went through what time I could message her since it was very early. After a while, I was finally able to tell him he could go. He was so happy.

We got ready for church and we headed out the door. He was so happy to be getting his day started. The whole way there he talked about going to church, wishing his best friend could come, talking about seeing him at his school in August, and going to grandma’s house. He thoroughly enjoyed church and was ready to get to his grandma‘s.

On the way to his grandma‘s house, he kept talking about different behaviors like screaming and licking people’s heads. I told him that we should start talking about good behaviors instead of behaviors that kept him from going to his grandma‘s house yesterday. I asked him if he could tell me what good behaviors were. He said, “Listening, sleeping till five, and being kind.” I was very happy with the behaviors he was listing.

I dropped him off and he stayed for a couple of hours. They were even able to have a campfire. When I came back to get him, we played on the computer for a little while, and then my mom and I sat and talked. The rain kept us there a little bit longer and then we headed home. He did amazing in the car and was very calm. He ate the sausage dog she gave him on the way and said, “More sausage dog please” about halfway home. He was very calm all the way home.

We ate some more dinner and then he sat next to me showing me another daycare he went to. It is amazing how many places he can find that he went to when he was little. We had a great rest of our night and I was very thankful for his behavior all day. I hope that he sleeps tonight and has a great Monday. His amazing smile and laughter made my day. Always look for the silver lining and let it shine through. Smiles to all and donut daze!