It was a much better start to our day. I’m still not feeling my best but at least my head was not pounding. Owen slept until almost six so that was happy times for both of us and he expressed how excited he was that he could go to church. He wasn’t quite as hyper this morning as he was the last few days and I was very thankful for that.

He started reminding me of all the times I didn’t go the way he wanted me to go in the car and everything that was left out of our bags or unavailable when we go places. The memory on this dude is amazing. I am truly fascinated by how he comes up with all the things he wants to tell me. He also tells me everything that he hasn’t done or the places he wanted to go and for whatever reason we ended up not going like being able to see his favorite statues across the city or the buildings and underpasses he loves. When your child is fascinated by architecture and calls places as he sees them and not their names it is always a wild ride in the car.

He heard me getting out of the “white bed” and he immediately started screaming “mommy sit in the white bed mommy sit down.” He was playing and didn’t want me to interrupt him. I told him I had to go to the bathroom. He screamed louder “No bathroom today” and kept going. His feet started stomping and his voice escalated. The meltdown was coming. He has such a hard time processing a change in his schedule and this leads to a lot of emotional moments for him that sit right on the line of meltdowns. My emotions cause me to sit so much of the time because the meltdowns come fast and unpredictably. I could get up ten times for ten reasons but on that eleventh time if I accidentally do one wrong thing he is crying on the floor or under a blanket screaming for hours. My heart breaks in these moments and how to ease him past the meltdowns. The calmer I am the calmer he is.

We got ready for church and we headed out the door. I was going to sit in the car because my stomach was still not feeling my best but our friend told me she would bring him home. He was so happy when she brought him home so he could get a picture with her leaving. I am constantly reminded how growth can come in an instant. It was only a few short months ago that he wanted to actually look at pictures of his friends. It’s a beautiful thing to watch his growth.

“August,” he called out to me as he was watching Christmas videos. I said, “What about it?” He said, “It’s August 31st last day of the month.” He amazes me with all his knowledge and attention to detail. I always wonder what he is thinking and planning. January, March, and June for some reason are already action-packed for him. He has plenty of people that he wants to do plenty of things with and I’m thankful for all of them.

The road has grown me. Being a mom to an exceptionally bright star has been the greatest gift of my life. I never imagined what this road would be like and all the twists, turns, dips, and catapults it would take but I am thankful for how much it has taught me about love, compassion, and understanding. I thought I knew what kindness and grace meant but until I had Owen I truly only thought I knew. I never imagined I’d say my son has meltdowns over bananas but can speak in more languages than I even know. The beauty of life is the gift of allowing each of us to be exactly who we need to be. Never judge a book by the pages not read and the cover not seen.

I pray sleep happens for both of us. With his schedule being off I can only guess how the night will go. He wants to go to his grandma’s house so he knows he has to sleep. I’m thankful there was only a little rollercoaster ride today and routine will be back in one more day. Let the joys of life outshine the challenges that you face. Smiles to all and donut daze!

I knew my day was going to be rough when I woke up for the second time before midnight. By two in the morning, I was up many more times and I could feel my headache getting bigger. My stomach was not happy and I knew it was going to be a rough day. It was right on time like all the other ones but hopefully this one won’t be as hard as the last one. I kept thinking how blessed I was though because I wasn’t having a lot of the other symptoms like I did for the previous one.

Owen woke up at 4:30 right as I was finally falling back asleep. He wanted his tablet and I should have given it to him but I was trying to stick to the “five oh oh” timeframe. For the next thirty minutes, he came back five times. Truly it was not worth it but I stuck with it.

Noise was not my friend and Owen thinks it is funny when I tell him to turn down his tablet. When my head was pounding that made my stomach worse and then he was playing his tablet so loud. He played the one song over and over and over. He wouldn’t turn it off and instead turned it louder and laughed. He finds it funny when I don’t feel well because he doesn’t know how to process it and laughing is how he gets through those moments.

Thankfully my medicine finally started working and I was feeling much better. His Saturday was going to be in full swing because he was so happy to be going to see his grandma. We got ready and off we went. I try to focus my nerves of steel instead of my nerves of spaghetti. He yells out constantly now “Pay attention” and then he tells me every car that changed lanes, stopped in front of us, or did something he didn’t feel was right and he is pretty much correct every time. The thing is he doesn’t forget any of those good or bad drivers and reminds me of them when we are sitting at home doing something completely different.

He enjoyed his time with his grandma and then she drove him home via the “blue church” the requested four times. When she dropped him off he wanted a video of her leaving. Oh, how the world has changed for him to want pictures and videos now. It is amazing. He has only recently wanted to even look at pictures or videos of people he knows and now he requests them from everyone. He couldn’t wait for me to send it to his tablet so he could open it to the main screen but not watch it. This will take him days before he will watch it if he ever does.

The mind of my genius is constantly going. When I was taking him to therapy the other day I told him I would take him to the statue. He really likes to see. However, when I was driving, I got in the wrong lane because I thought I needed to turn instead of going under the bridge. I explained to him I wasn’t thinking about where I was and that I made a mistake. Since then he has reminded me of this many days. Today he said, “Burger boy is working mommy made a mistake you put turn signal wrong way you made a mistake” and continued to explain how I made a big mistake. He truly does not forget anything he does not want to forget.

He told me earlier to concentrate on the dogs. I have no clue why he said it but he just randomly told me that. I told him that we were going to move to the woods when I found some property and then we could get dogs or other animals if he wanted to. I also joke with him about purple cows and now he wants to move to property that has purple cows.

“Talk about be so loud the bump,” he said. Anytime he says this or he makes this melodic song. I know it is about to get very loud. He starts screaming louder, and everything is funny to him. I’m not quite sure where the statement or where the humming song came from, but it is something he has done for years and I brace for the noise.

“Uncle Wichard is gone give him one more time,” he said. He asked me about my brother all the time and when he’s coming back, he will then say that he died, but how do I explain that? he wants him to come visit him. I pray for some kind of understanding for him or a way for me to explain it better but each day is a memory of somebody Owen wants back in his life.

I pray we both sleep tonight and get to go to church tomorrow. I’m thankful for a great support system and that Owen loves going. I’m glad that my headache is gone and I pray that my stomach will rest tonight. I hang on to the progress that Owen is making and I know that these connections will come. Each day is a gift. Bedtime did not go as smoothly but thankfully, he fell asleep quickly. Never give up on the hope for tomorrow and always count your blessings. Smiles to all and donut daze!

Let’s just say I can tell when we have a schedule change. When things are not what Owen thinks they should be we have an all-night party and we are the goers. He woke up around one to tell me the new advisor was coming today and that was that. He told me all of his concerns for hours. It is amazing how many things he wanted me to know about the situation and what I should do to fix it.

He was afraid our new advisor was going to be here at night so he couldn’t sleep in his bed. He was worried she would take it. He did not want to share his tent with anyone and did not want to hear her snore on the couch. Between one and when he left for school he informed me of so many things he did not want her doing and all the things that were in the wrong place for her visit. I didn’t put the blue blanket on the couch or the chair. Plus he wanted to make sure we knew what car she drives so that he could make sure when he looked out the window to tell her bye bye he would be telling the right one goodbye. The list kept going and I kept wanting to go back to sleep.

As the morning went on he was beyond hyper, ready for school, not sure how he felt about her coming, and he wanted to know where everyone was that he had ever met. I decided I would see if we could call her instead because he wanted to talk to her first before she came. So ready, set, we got ready for school, and went to wait on the porch since the bus app was not working again. He played his ukulele before we went outside to wait for the bus and music filled the air. He was the happiest boy ever to get on that bus. When things go the way he wants it is fabulous.

When I realized I had scheduled his appointment on a Friday I knew I had made a huge mistake and he would be up all night. Fridays mean coming home and staying in so he can prepare for going to grandma’s house on his Saturdays. With this realization yesterday I went ahead and rescheduled my appointment that I had today to next week because I knew I would be too tired to be able to go. Thankfully when I texted our new advisor she completely understood and we worked it out that she could call me earlier and then FaceTime with Owen so he could see her.

I know he needs everything to be very routine with a side of what he wants when he wants it. The trick is figuring out what he wants and the balance with trying new things because he has fun after he gets used to the new fun things. Having Monday as a holiday is also throwing him off. When he came home we discussed his antics and then I told him that our advisor wasn’t here but she was going to call to talk with him.

The call went well. It was just quick since I had talked to her before he got home. He played his harmonica for her. She will come visit us in a different month but I will not tell him the date until morning or when he gets off the bus. He is doing better about his schedule but there is still that fine line of what to tell him. I look at how far he has come though because when we first started with our previous advisor FaceTime or phone calls brought on huge meltdowns. He could not look at people who were talking directly to him or listen on the phone. Any phone calls I got brought both of us to tears. The sound of a phone ringing still makes me cringe praying he doesn’t have a meltdown over it now.

We talked about his big plans for Saturday, Sunday, and Monday. Grandma’s house, church, grandma’s house were the agenda items he wanted to discuss and I wanted to discuss bed. I pray he sleeps tonight. It was a four stomp to the bed night but there was no screaming and only a few extra moments of questions. Through challenges there is growth and that goes for both of us. Let tomorrow be the best day ever and know that you can make a difference in the world. Smiles to all and donut daze!

Another successful night for Owen. Me not so much but I was thankful he did. I fell asleep when he did but then woke up and couldn’t go back to sleep for hours. When I finally did it was time to get up. He was in a great, very loud mood. He couldn’t wait to get to school and therapy.

Trash days are probably some of the hardest days for him especially when he is ready for the bus to come. I can get him occasionally to help me with a bag but that gets him very distracted and he cannot focus on the bus coming. It’s emotional for both of us because this is something he needs to know happens and he needs to know how to do it but timing truly is everything. The best time to do it is when he doesn’t want to do it but he needs to know it has to be done. In circles I go overthinking the littlest of details hoping he won’t scream about it or be into much of a sensory overload to enjoy school. Luckily I got the bags out and we could wait for the bus without interruption.

It is the little things that sometimes get me the most and it’s times like this that I know it is all so hard for him. All morning he talked about meeting our new advisor tomorrow. My heart does another little flip. He wants me to put the exact blankets on the couch and chair that we had on them last time our previous advisor was here. When the mind never forgets a detail the details are important. I am not sure which ones were on them but he will for sure let me know if I am wrong. The screaming about the details is hard. One day at a time I remind myself.

I picked him up from school for his therapy and he knew he only had one session. His therapist said he did great and was much calmer than on most days lately. He was able to concentrate and do the exercises she told me. On the way home he wanted to get Chick-fil-A. We went through the drive-thru and he told me all about it on the way home. He was afraid they didn’t put the right stuff in the bag even though I had told him I checked. I told him believe me I always check now.

The night was filled with twists and turns and more screams than I could count. It was time to go to bed and I was carrying a cup in my mouth. Sometimes this is the easiest way for me to walk. When you use canes you make do with what you can. As I was walking towards the kitchen he saw me and came to rip the cup right out of my mouth. My heart sank. I know he is struggling because my hair isn’t growing fast enough for him and something like a cup in my mouth changes my whole appearance and his whole world. It brings me right back to the days of huge meltdowns when I would pull my long hair from one side of my back across my shoulder. I pray that I can help him refocus and not continue to have meltdowns over these moments.

Bedtime came and once again he was concerned about our new advisor and how long she was going to stay. He didn’t want her to be here when he went to bed and he wanted to make sure she knew she had to leave. He wanted to know what car she would have and if she knew that she had to stay on the porch. I told him she wasn’t staying on the porch and he said yes she was. I pray he sleeps tonight and this doesn’t cause him too many emotions. I’m always torn about whether I should tell him things but letting him know helps him process it all.

After the screams about my cup settled and we said our prayers it was only a two-stomp night and off to bed he went, asking if his teacher would eat a banana and if the aide would eat a pear. I pray for sleep. I pray he can rest and have a beautiful day tomorrow. I’m thankful for his progress. Each day is a brand new day and today I rode the emotional train. Focus on the good stuff and let the rest go. Smiles to all and donut daze!

What a great start to our day! Owen slept all night. I slept for about four hours straight. He was in a great mood. The bus app was working. And I was not showing any of the additional symptoms from the infusion just the regular old symptoms.

He was a little wound up before bed so I was praying hard for sleep! Thankfully he is sleeping much better now that his routine is mostly in order with being back in school. He was very ready for his day and couldn’t wait for the bus to get here. When he wakes up in the mornings he is all talk and talk and talk. And then we talk some more. It’s a pretty wild ride. I need lots of coffee to get going and he doesn’t quite understand that.

We got ready for the bus and he started telling me about different people he was missing. He told me the last time he saw them and that he wanted to see them again. His memory blows my mind even though I see what he is capable of remembering and doing. We went out to wait for the bus and he was very excited because when he got home from school we were going to pick up our friend for dinner. And he didn’t want me to forget.

When he got off the bus the first thing he wanted me to know was that we were picking up our friend for dinner. He wanted a snack first for my growing boy and then we were off. To say he was excited and hyper was an understatement. We got there and he was so happy.

Off to the restaurant we went. He continued to be very hyper and excited but thankfully he was still able to maintain his composure. He wanted pancakes and bacon for dinner. He was so happy to be there with our friend. We finished eating and I asked him if he wanted to go anywhere else. The only place he had requested was to go back to her house and sit under the trees.

We drove back to her house and there they sat playing on his tablet. I can imagine the conversation they had. She is very patient with him and in his very hyper moments, she calms him down tremendously. After a while, we left and he talked about moving to the woods with purple cows. I love that he is embracing the thought of moving. Now to find some property with woods and purple cows.

The minute we walked in our door the screaming began. Everything was open for debate and for him to scream at me. I can only imagine what was going through his mind. Plus I know that it is hard for him when his schedule is off even when it is something he wants to do. He finally calmed down and we sat together laughing before he got ready for bed.

It only took a few stomps and screams after our prayers for Owen to go to bed. He prayed for our friends, his teacher and aides, and his grandma. His last part of his prayer was that he hoped he would sleep tonight. I prayed that too. I see so much growth. When his brain catches up to his words or his words catch up to his brilliant brain I know that we are going to be in for even more of an amazing treat. His memory will spill over and it will be wonderful to hear all his stories from times gone by. Dream your dream and make it happen. Smiles to all and donut daze!

Here’s to another great round of sleeping for one of us. I suppose I slept OK but at least Owen slept great and was very proud of himself for doing it. I was in the kitchen when he came around the corner. “Slept past five oh oh school mommy’s going to take me to school,” he said quickly following it with “grandma’s going to pick me up you will know you will know.” I reminded him that I didn’t know yet if she was going to. I always say “You will know when I know” so his reply is always “You will know you will know.”

I told him our complete schedule so he would know what was happening and he ran off to get his tablet. I know he would have slept later if I didn’t make so much noise but we needed to get going a little early so I wasn't exactly being quiet. I was thankful he was in a great mood. I know he was torn about whether he wanted the bus to bring him home or if he wanted his grandma to but I reminded him I would probably be home early enough so he would probably ride the bus home.

Before it was easier on him if I didn’t tell him our schedule and only sprung it on him right before it happened. This prevented him from dwelling on it or keeping him up all night with excitement. Now he wants everything to be scheduled and only spring his calendar but this is also hard because he then knows and is planning things for the years to come. I try to explain to him that most people don’t know exactly what they are doing on a Wednesday in June of next year but I just stick with how happy he is planning things and how big a difference it is now for him. In just a year’s time, I’ve seen incredible growth and huge changes. I can only imagine how much my sweet baby O is going to change and how much he is going to change the world.

We got ready and we were off to take him to school. He was so animated in the car telling me all his hopes and dreams. We got to the school and off he went to his happy place and I was off to the cancer center for one more infusion. I kept praying that they would say this is the last one but knowing I would have three more to go.

I had my bloodwork and then talked to my doctor. After talking through options he wanted me to try one more time but with only one of the drugs. I will go back to see him soon to go through any new reactions and discuss moving forward. He wants me to finish them because it is better long-term. I agree with him I just don’t want to get sicker from the actual drugs that are supposed to be helping me. Thankfully so far no new reactions.

I was home plenty early so Owen rode the bus home. He is home and he was wired. So much muchness in such a short time. I can’t tell if he was happy or sad about the bus or if he wanted to go to his grandma’s house. He mentioned both but it was the whirlwind of everything else that was happening around us that got him stirred up. Then he was telling me about all the dresses I have ever worn and that sent him down the rabbit hole before we even walked in the doors. He became calmer as he was eating his snack but there were lots of screaming mixed with “sorry mommy” moments and words.

I’m always torn about whether I should tell him things because I never know how it will go but he wants to know more about his schedule and calendar so it is part of growing up. Plus he needs to learn how to deal with his emotions and as much as I would like to fix them I know that he has to process them. I still want him to know I am there for him though.

He was calmer but he did not want me to move a muscle. It’s a wild ride on days like this. One wrong move and it’s the house built of sticks. He needed me to make sense of everything that happened to him. Sometimes when he comes home he has to let go of all the emotions he has been dealing with all day. As much as he loves school I know it is a lot for him to go through as well.

The nighttime was about the same but at least there was no more screaming. We have a very busy week again and he knows all the moving parts but right before bed he wanted to make sure of each step. This took about twenty minutes and then he was finally in bed. One day at a time and one moment to keep striving for success. He is making incredible progress and I am thankful for it. Life is full of challenges but learning to accept them for what they are worth and pushing right past them will keep us moving forward. Smiles to all and donut daze!

Calm is the answer. The calmer I can keep Owen the better the nights go. I was thankful for another successful night of sleep. He was ready for his day and told me about it when he woke up. He couldn’t wait to get to school to see who was going to be there and what they were going to do.

We were quickly at the crying baby stage of our morning with a side of why are the magical hats gone. I truly wish I could explain to him that manufacturers change their games all the time and they took that game away but it was one of his favorite games and now he asks about it constantly. And I wish the crying babies were at least set to normal speed. It is interesting how he can listen to some things over and over but certain sounds will send him through the roof. He likes the alarm on his tablet but he never wants to hear mine going off. I am always fascinated by how loud he will listen to something but he can still hear noises that are so quiet I’m shocked that he even heard it. He will run from the other room if my phone rings even on the quietest setting.

We got ready for school and headed out to wait for the bus. Without the bus app, it is kind of a guess as to what time they will be there. Generally, they arrive at pretty much the same time but I don’t want them to miss it because he loves it so much. He knows I’m taking him to school tomorrow so I can go to my infusion appointment so I definitely didn’t want him to miss it today.

I picked him up for music therapy and he told me he had a good day at school but still wanted to talk to me about bleeding, spitting, hitting, and kicking. These are all things he loves to talk about but generally never does. The boy era is upon us. I try not to react and my go-to is to distract him but he senses every part of my emotions and wants to talk about it more. I quickly turned to talking about food. He told me he had a pepperoni roll for breakfast and pizza for lunch. I have a feeling that isn’t what he had but maybe. We headed off to his music therapy and he was happy to see his friend there for their session.

We got to his vision therapy appointment and he became their door greeter. He loves to tell people “bye bye she’s leaving have a good day.” He had a pretty good session with his incredible doctor. I’m so thankful for the people in our lives who work hard to help us grow. He told her so many things about the stuff that has happened in his life over the last few years. It is amazing how he travels in time backwards and forwards seamlessly to express the things he wants us to know. He talked about her shoes when we first started going to her and went forward to talking about us moving to the woods, getting a purple cow that says moo, and a dog named Frisbee. I always joke with him about purple cows when he purposely calls something the wrong color or if I’m joking with him. I found it funny that he wants one when we move.

The night was a rollercoaster. I pray he sleeps tonight. I changed his bedtime a little because I was doing things around the house and as much as he changes it himself he does not like when I change it on him. He made sure I knew it and the screams and behaviors began. I try not to leave things to the last minute because he gets upset with me moving around the house when he is trying to go to bed but sometimes I just have a few things I need to do. He doesn’t want me making any noise or moving around the house. When you have a small house it is hard to be quiet. I finished quickly and off to bed he went with a few more stomps once I made it to my room.

Each night I pray for calm. Tomorrow is infusion day. He knows I’m going and it could possibly run late so he may be picked up by his grandma. He wants that to happen but it is also so hard for him to handle the possibility that he won’t ride the bus home. It is good for him to have changes in his schedule so he can learn but it is also very hard for him to process it all. I pray there is calm for our day. I loved hearing my big brain sweet baby O tell his stories of days gone by and what our future holds. Your story has only the first chapter written. Let the next chapter be the best one yet. Smiles to all and donut daze!

Owen slept until 6:43! I only got up once and I was determined not to get out of bed until he woke up so I wouldn’t make any noise. I could hear him coming to me with his great news. “Slept upper night get to go to church big boy mommy three hours go to church,” he said. I don’t think he knows how much time we had left until we left for church but I’ve said that so many times I think he said it because of me or maybe he is starting to grasp it.

The “pay attention” directive is going to get me. I have to learn to let it go and know that is how he is processing it. I am trying to teach him how to stay calm in what he thinks are stressful situations but sometimes that leads to stressful situations. I try to remind myself that I am raising an adult as much as he is learning to be a thirteen-year-old. My words mean everything to him and selecting my words to help him grow is very important. But he also has to learn that we are all human and we have to extend kindness and grace to everyone. I was reminded about taking everything one day at a time.

He was asking about everyone from our church and when they are doing things with him. Some friends were now taking him places in March and June. Others have the pick up from school duty. He was so excited about going to church to tell them and he didn’t stop talking about it. He loves his people. I am so thankful for how much they love him too.

My dropsies did not inspire a calm morning right before we were walking out the door for church. I’m trying to show Owen how we can help each other with tasks and chores. This isn’t something he can completely process yet but I do see growth. This is where my own learning experience is part of his growth process. It doesn’t take one, five, or even ten times for him to learn something instead it may take hundreds of times. The daily routine of life does help him to understand what I mean.

Working on tasks is also not as simple as telling him to go do something. Saying “pick up the bag on the floor in front of you” is not always specific enough. He will start looking everywhere and pick up everything but the bag. These are steps I should not try to work on as we are walking out the door, my learning growth is needed too. He has come so far but there is so much more for him to learn.

He had a great time at church. Someone gave him gum and that made his day. He was pretty calm when we got home but definitely wanted me to pay attention. He was processing his days ahead. Monday he has school and then music and vision therapies but the assistant won’t be there so he keeps reminding me that only the doctor will be there. Tuesday he wants everything to go smoothly. I have my infusion that day so I have to take him to school and if it runs late he will have to be picked up from school by his grandma. He loves going with her but all of this throws off his routine so he is torn. We are going to dinner with our friend on Wednesday. He is very happy about that. Thursday he only sees one of his therapists so more processing with that. And we can’t go anywhere Friday night because that goes against routine but we are meeting our new advisor and he is still trying to understand why we have a new one but knows we have a new one. We have a very busy week ahead and it is a lot for him to think about.

He asked me when we are moving to the woods and getting horses and dogs. I had agreed to one part of that statement so I’m not sure where the other part came in but I’m happy he is thinking about it. I pray every day that I find property soon. I am ready to get us moved.

The night was emotional for me thinking about my next infusion on Tuesday. This last one has been the hardest since I had my chemo infusions. I have four more and I pray for strength every day for these last ones. I have to stay strong. I’m thankful Owen had a good day with a side of being thirteen and learning how to push mommy’s buttons. I pray for sleep again tonight for my sweet baby O. His requested tickles came in and the laughter erupted when all I had to do was stick my hands up in the air. And that makes my heart happy. The little moments are the greatest joys in life. Cherish them all. Smiles to all and donut daze!

Thankfully the sleep train was on track for one of us. Owen greeted me with “good morning sunshine how are you today I’m fine grandma’s house tablet.” I told him we would have to ask his grandma first as I always tell him. Generally, he can go but I always like to check with my mom in the morning in case anything has changed. He was beyond excited for the possibilities of today and wanted everyone he knew to drive him everywhere he wanted to go.

His old tablet didn’t charge to 100% overnight as he told me so he wanted it back on the charger. He was very calm about it and told me to plug it back in. I was happy he didn’t get upset. I told him that it doesn’t charge sometimes and that is why he got a new tablet. In a few minutes, he came back and said, “100% I pray.”

We had many conversations until we headed off to see his grandma. He wanted me to tell him what I was doing while he was at his grandma’s house but I told him I didn’t know until I was actually going to be doing something. He didn’t like this answer but I told him if he screamed at me he wouldn’t get to go to see his grandma so he listened thankfully.

He reminded me that I forgot his tablet on Thursday and that it was a mistake. He told me not to do it again. I told him that we don’t always remember things and we have to give each other kindness and grace. He wants the tooth fairy to come and bring him lollipops even though he has lost all his baby teeth he still wants him to come. We got ready to go and I took him to his grandma’s house. He paid close attention to how I stopped at every stop sign and told me to “pay attention.”

His grandma brought him home later after going by the requested “blue church” four times. He was very excited that I took a video of them coming home and then of my mom leaving with him standing on the sidewalk to watch her go down the street. He kept asking me to send it to him before we even got in the house. Amazing how things have changed. He never wanted to see pictures or videos of people he knew. Phone calls and FaceTime were extremely upsetting to him as well. He actually kinda looks at them now too.

He was tearing one of his favorite books when he came home. Not quite sure why that is a thing now. I am taking them away from him for now until he is through this phase. I have tried to ask him why he is doing this to his favorite books and he just laughs. He loves “cut the paper with scissors” so I’m not sure if it is something he thinks is OK even though he knows it’s not.

He came to the kitchen and he told me that I paid attention at the stop sign but he was mad because the guy got to go first. I told him that is how stop signs worked. He just looked at me and I have a feeling he did not like that answer. I at least got to know why he yells “pay attention” at me every time I drive anywhere.

I was texting with my mom about us going to church tomorrow and that he always says “If you wake up at two o’clock in the morning what’s going to happen?” He told her the same thing. He knows he needs to sleep in order to go. And as I sent the text my little ESPian walked right up to me and said, “Go to church if I wake up at two o’clock in the morning no sleep till five oh oh” and then laughed hysterically. He has the knack for saying something right as I am thinking it. It amazes me how many times in a day he will bring something up that I am thinking about and it isn’t always things he says or does.

Owen walked up to me and said, “Stars coming.” At first, it didn’t register and then I realized he was telling me it was bedtime. This is his new way to tell me about it being night. I told him that it was time to get ready for bed. His brain never ceases to amaze me. I’m filled with wonderment every single day with all that he knows and remembers. I hold on to each word because I remember when he couldn’t talk. I would tell him every single day that he was amazing and could talk that all he had to do was move it around in his brain and find a place for his words. He talks and I listen. Each one of his words is a miracle that is woven into my heart. Never give up on the miracle yet to come. It will happen. Smiles to all and donut daze!

Another successful sleep-filled night for one of us. I was very thankful for that. I woke up not feeling my best and knowing that next week I will have another infusion. The rollercoaster nights get me sometimes. Even though Owen has been sleeping better I listen for every noise praying he doesn’t wake. He slept until almost six and probably would have slept later if I could have been quieter.

I think it is the unknown of how he will react when he wakes up in the middle of the night that gets me the most. You would think I would be used to it by now but it makes me sad to think that the screams come from my amazingly awesome sweet baby O. My brain may know how I’m supposed to react but my heart cries for how incredibly hard it can be for him to process what seems like time standing still to him when he comes in my room ten times to check his schedule. I am thankful now that school is back that he is generally sleeping better but now it’s Friday night and I’m anxious about how he will sleep tonight knowing he wants to go to his grandma’s house tomorrow.

We had a few little behavioral moments this morning but otherwise, we were off to a great start. He was very excited about getting his day started and that he slept all night. He was ready to get out to the bus again. We are back to guessing when the buses will get here because the app is not working so I made sure we were out there very early but that makes him more anxious. The bus got here and he was off to his happy place.

My little planner got home and started planning his days ahead. It sounded like he had a very active day of spitting, kicking, and scribbling even though his paper said he had a great day so I was pretty positive these were not his behaviors but oh how he likes to talk about them, and distracting him is like trying to move a freight train. Although from what he has expressed his aide was acting up more than he did and they both got in trouble with his teacher.

Then it was on to planning. We are celebrating everyone’s birthdays and he knows that he wants everyone to pick him up. He was then in the devouring snack stage but ready to say good morning to his grandma and go to church on Sunday. This was quickly followed by listening to Christmas songs and singing some songs in other languages. The night moved quickly and he asked me when he would see the stars.

Today was one of those days when I was having my own personal pan pity party. It’s now Friday night and I knew he would come home, immediately change because Friday nights we stay home waiting for Saturday to come. I wish we could have gone to a concert or he could hangout with some friends at a football game but instead he was excited to listen to the babies crying over the pacifier and showing me he found my favorite huge blow-up rubber ducky that is no longer at the spa store. It makes me happy that he looks at it on videos to show me.

I try not to get bogged down by the woulda, coulda, shoulda beens but instead rejoice in the fact that he reminded me no less than ten times we are going to breakfast with our friends from church that he planned and can’t wait to go in September. My planner is now planning things and can’t stop talking about people’s birthdays and what he is going to do with Santa. I rejoice in these moments. I hold onto these moments because I remember how many meals we missed, parties we had to walk out of, and stores we could not even step foot in since he couldn’t handle the sensory overload in those moments. And now look at him grow.

The emotions rise up sometimes crawling through my throat to finally escape from my eyes. And I try not to dwell because then more emotions swell but my heart that cries watches him grow before my very eyes and I breathe. I remind myself not to focus on yesteryear except to look back and see how many stepping stones he walked on to get to the path he is on today. There will be joy tomorrow and he will always have the smile that makes this momma’s heart rejoice. Look for the sparkle in the day and the sunshine on a rainy day. It will come. Smiles to all and donut daze!