There ain’t no rollercoaster ride like a Sunday rollercoaster ride of emotions. The word “ain’t” always reminds me of my childhood. We weren’t supposed to use it. That official grammar rule. Maybe that’s why I like it so much now. The rules are hard sometimes and the days feel emotional. I quickly wrote to God this morning. Dear God, I’m weary and I’m tired. A year ago today I didn’t know how much my world would change within a week. Please let me find peace in my heart today wrapped in your security. I think the Amen was roared loudly. The week ahead already feels hard. Tomorrow is the first last Monday before I lost my brother, then Tuesday, Wednesday, Thursday, he died on Friday after thanksgiving. The date he died was the 26th but that’s on Saturday. I keep trying to think about that. It’s like it’s supposed to move me forward. I’m not there yet. In the darkness, I stood once again probably figuratively as much as literally. Owen turned the lights out as soon as I had my coffee in hand. He was calm about it but they were out. He had slept all night, woke up after six, and the first word out of his mouth was “church.” It was quickly followed by “iPad.” The lights didn’t stand a chance this morning. He was in a great mood but sensory overload was on top of his great mood like a shadow following him even without the sun to cast the rays. He was so happy though. It was church day and big slides. The morning went quickly. It was a combination of his school iPad, home iPad, and YouTube that kept him laughing singing and running back and forth to me. When we drove to church we talked about Santa coming back from the “Pole” and he was bringing the Easter Bunny but he couldn’t see Santa today because it is November. The rules. He thinks he is bringing the Easter Bunny since they come to the same place. We then started talking about going to the big slides. I reminded him that if we go to the big slides we are getting pizza which means no tractors and no chicken nuggets or cheeseburger. I told him we either did one or the other. He wanted big slides. I explained to him that when we left church we would go home for a few minutes, get a snack, and then go since they didn’t open right after church. He was calm about the whole thing. We got to the indoor playground and before we went in I told him that before he went on the slides we were going to order the pizza and then he could go on the slides until it was done. I wanted him to be aware of all the steps. When the pizza was done he sat and ate with me but I knew he was ready to get back on the slides. About that time I looked up and Owen’s very best friend walked in the door with his family. I told him to look who is here. These two were so incredibly giddy to see each other. Their smiles and laughter warmed my heart. It was so wonderful. They have been in school together for years now and I’m so thankful for their sweet bond. Owen had an incredible time and we stayed there for several hours. The blue pants put me on high alert and he told several people to wear them tomorrow. What really got him though was when a boy had one pant leg rolled all the way up and the other one was down. I could see how upset this was making Owen so we left soon after that because I knew he would be in sensory overload before we knew it. The rest of the night was spent talking about the week ahead. I finally saw an update that unless we got a call there would be school tomorrow but this had already been weighing on Owen and he repeatedly asked me about each day and what we were doing. He said, “two sleeps” which was what his teacher had said to him when they were going to be gone an extra day during the week so I’m glad he is making that connection. I’m thankful he should be in school for the next three days because that helps his routine and I hope that it doesn’t change. He fell asleep with the fake snoring again and I’m thankful for a good day. Don’t wait for life to happen. Make your life what you want it to be. Be brave in your soul, strive to get to your highest potential, share your story, walk the walk, reach out your hand to others, make that call, send that message, do all the things that make you happy, and live life forward. Smiles to all and donut daze!
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“iPad,” Owen said. I wasn’t sure if I was dreaming. He said it again. I was trying to focus but all I could see was the clock blaring at me that it was in the middle of the night and we should be asleep. He said it again. At this point, I told him to go back to bed because it was the middle of the night. He was on a roll, “iPad.” I told him once he went to the bathroom he could take his tablet back to bed with him. I knew where this was going to go as well. When he came back I gave him his iPad but he didn’t want it. He wanted his school iPad. His teacher sent his iPad home with him in case the school board decides to go virtual next week if they don’t have enough staff to hold classes. When they approved the calendar they only had the holiday for Thursday and Friday so many of the staff members took the rest of the week as their vacation days but now this is leaving a shortage of bus drivers and staff at some of the schools. Owen knew his school iPad was in his backpack and he was elated. He has an iPad but he loves the apps he has for school. He went to bed thinking about his iPad and he woke around three in the morning wanting it. And that was the end of the story. He was not going back to bed and he wanted it. When he has his school iPad I make him sit with it because I don’t want him getting it wet or dropping it or a thousand other scenarios I can overthink about. I told him he could not have it until after breakfast. So at four in the morning, he ate all his cereal, asked for waffles, ate all of those, and asked once again for his tablet. Now I have to say this is probably the fastest most complete meal he has eaten in a long time. The tablet was his. But at this point, I certainly woke up on the wrong side of the bed. We worked on our eye exercises and I am also trying to make him more aware of how his body moves so I asked him to tap his foot. He bent over to touch his toes. I showed him how to do it and he was still having a hard time processing it so I took his foot and moved it up and down. He kinda did it but it will be something we work on. I am noticing more skills that I felt he knew and now are gone. The best way it was described to me is those skills are sitting on a shelf waiting to be used again but right now he is learning other things. We got ready for him to go visit Grandma and he got his socks and shoes on pretty quickly. In the car, I tried to distract him and I told him we could write a story. I asked him to name an animal. At first, he wanted to call it Salty the seal but I told him that we needed a different name since that was the name of the seal on the Mickey Mouse Clubhouse. He then said a cow. I asked him what the cow's name was and after several choices, he said, “cow cow belle belle of the ball.” It works for me. The morning was anything but smooth and I was hoping that he would enjoy his visit with Grandma. I know when he doesn’t sleep well it can last throughout the day. He enjoyed his visit but my Mom said some moments were hard on him. On the way home, he was on a roll. He told me it was November and was planning our visit to the Halloween swing while waiting for Santa, and wanting a turkey hat. He said, “it’s snowvember but it’s not snowing now.” He told me he was going to the pumpkin patch and the petting zoo. Plus we are going to the slides tomorrow to get pizza and then he wants lunch Monday, dinner Tuesday, and breakfast Wednesday with my parents. Then he told me “mommy pick me up on Thursday” to see his therapists. His favorite day is Thursday and he won’t be in school and he won’t see his therapists. He is understanding more about holidays but it is still hard on him when he doesn’t get to do the things he loves. The night was a rollercoaster ride with him wanting his school iPad and running from room to room, sitting on the floor vents even though I told him not to. One day I’ll figure that out. He talked himself to sleep and I was trying to stay awake while I waited. Thankfully we laughed a lot on the rollercoaster ride and I know that tomorrow will be an oh-happy day if it all goes according to plan; church, big slides, and pizza. Today is the first day of the rest of your life so make it grand. Smiles to all and donut daze!
The screams. The loud, loud screams. It feels like almost every morning I’m greeted by a scream lately because I’ve done something like get up out of my own bed or go to the bathroom at a time deemed screamable. Once we got the screams out of the way it was a great morning. When we were at his therapy yesterday he took his shoes off to be in the swing. Once the exercise was over the therapist told him he could put his shoes back on. I found it very amusing how fast he did this and he literally was not dragging his feet. He wanted to move on to the next exercise. This morning when I told him to put his shoes on I referenced how fast he put his shoes on for his therapist. It was funny to me that my talking about it seemed to put a little pep in his step and he put them on quickly. We stood outside waiting for his bus and he was very animated and full of information. He told me he wanted to go on a treasure hunt to the park with the telescope so he could find a monkey and ducks. He wanted the key to his treasure chest so he could hide his coins. He told me he was going to take his pirate binoculars and “we are the pirate big boys and girls.” He said, “pirate says arrr.” I’m always fascinated by what he comes up with. He also told me he wanted to go to the tractors. I told him we could depending on the weather. He said, “cheetah jaguar kinda like a lion.” He then told me he wanted to go to a petting zoo to see a cow. I asked him how many stomachs a cow has and he said, “more stomachs they eat grass.” He told me they give us milk and “they go moo.” When he came home from school it was snowing so I wasn’t sure what he would think. He immediately said he wanted to go to the park with his friends but then he told me to change. I wasn’t pushing it since it was really too cold to stay at the park for more than a couple of minutes. We practiced our clapping exercises. I told him to clap above his head and showed him as I did. He reached up with one hand and tapped his head. I showed him again with my hands and then took his hard and raised them above his head and clapped them with him. After two more times, he did one out of five above his head and then moved them down toward the middle of his chest. It was progress. I didn’t want to cause any ripples for the night so I tried to keep our exercises to a minimum. He had a great night. He ate a lot more than he has been eating since his teeth have been part of the equation. I let him stay up a little later than most nights to see if it helped him sleeping through the night and then the fake snoring always gets me. I’m hoping he sleeps great tonight. He was ready for his Saturday when he went to bed. I’m thankful for his smiles and laughter today. Always remember you are not alone in the journey of life. Smiles to all and donut daze!
I couldn’t fall asleep until well after one last night. My mind travels to places I cannot go. Sometimes the sadness hits hard. I know how far Owen has come but I still hear those screams when he wakes up to me doing anything he doesn’t want me to do. I never imagined that my going to the bathroom would cause him stress. The screams prove it. Once the initial screams were over he became much calmer and once again raced back to my bedroom to get in my bed before I finished getting my coffee. I tried to not think about it being their Thanksgiving lunch at school. Parents are allowed to come but I know how much it disrupts Owen’s day when things are not routine at school. I’m always torn as to which is better for him and the entire class. He is starting to make connections to the holidays so in the future it might be something that I can come participate in but for now, I tend to let him have his parties at school with his class. When I picked him up from school his teacher and I talked about how he was doing and the progress he is making. We talked about his goals and where he has come from. She mentioned that in his first year with her he would only raise his hand right in front of his chest, he couldn’t raise it in the air. In his second year he would raise his hand up with the help of his other hand but he would shake them together. This year he is raising his hand up with no assistance from his other hand or from them. This is huge progress. These are steps that have taken years to make but these victories are sweet. I remember when he first started pointing and I get excited every time I see him donut now. These moments, these victories I will always cherish. I told him “I love you” on the way to therapy. I said do you know what love means and he said, “hearts our hearts” and my heart melted. When we got to therapy he wanted me to go in with him. He said, “mommy come with me.” I was excited he asked me to go in. I hadn’t gone into therapy with him for a while so it was nice to see his progress there too. I’m thankful for his therapists and how much they are invested in helping him grow. He didn’t want to go to the tractors afterward because he said, “it was nighttime” and I have to say it did look like it was nighttime with the weather over us. We came home and the evening was very calm. We worked on several of our exercises and I’m thankful for another great day. Believe in yourself and make your dreams come true. Smiles to all and donut daze!
Owen slept all night in his bed but immediately wanted that tooth out as soon as he woke. There were some screams too. He couldn’t quite shake the sleepiness. He followed me to my bed after our morning routine. The tooth was not going anywhere at that point but he wanted it out. I asked him if he wanted to stay home or go to school. He said, “school first and then dentist.” He also said he wanted to see his teacher. I was able to distract him and we laughed a lot before we got ready. We stood outside working on different exercises. I took the exercise that the eye specialist gave us and adapted it by using the hood of my jacket. I had him look at my face and we counted to five with the hood of my jacket up and then repeated the exercise with the hood down. This helped him to concentrate on my face and that even with the hood up I was still mommy. We went back and forth with this several times and him breathing in between. I want him to be aware of his body and how he can calm himself during the day by breathing and redirecting his own energy. When the bus turned the corner he reminded me that he wanted to go to school and “mommy pick me up” so he could go to the dentist. I told him I was going to call the dentist to see if we could get an appointment today. I saw he was talking to the aide on the bus as she buckled him in. I wondered what they talked about. I thought perhaps it was his tooth. I let his teacher know that the tooth was still not out but I was going to try to get an appointment and I would let her know if I was going to pick him up. And I told her he wanted to make sure I let her know that he wanted to go to the dentist. I called his dentist but she was out sick today but they were going to work us in when she got back. Fortunately, his teacher let me know that his tooth came out at school and it was in his backpack. He let me know it was in there as soon as he got off the bus. He also told me that it was “tractor Wednesday” and that boy was determined to go. He told me he wanted to go to the dentist still but I told him he didn’t need to go now. He also was very interested in making a gingerbread house. I told him I thought that was pretty cool and that we would make one soon. We got a snack and then set off to see the tractors. We spent several minutes there but then he set his sights on going to the park. I told him we could go but only for a few minutes since it was so cold. He said, “it’s the park with the telescope I’m a pirate.” He was upset about the equipment being wet but I am trying to let him work through it. It’s hard to hear him scream over the swings and slides being wet but I need him to understand that it will dry. I gave him a tissue to wipe the few raindrops off and he kept squealing but he will learn it is all part of nature. I pray it will become something he can handle. He said he wanted nuggets and I said not today because I don’t want him to think every time we go someplace he gets food. He then said he wanted fish. I told him if he didn’t talk about blue pants tomorrow with his therapists we could go to the same places and then get fish. We did the “fairy” before he went to bed so he wouldn’t worry about it again all night. He hid his tooth numerous times before he was happy and then told me “the fairy was coming.” I waited a little bit and then fairy switched it to a coin and lollipop. This time he only wanted one lick and was done. We worked on more of his eye exercises. This one is clapping and similar to how I do the hand exercises with him so it’s a good transition for him. The night went quickly and I was thankful he was eating more now that his tooth was out. He was ready for his Thursday and I’m hoping it is a great day for him on his favorite day. Let happiness wash over you and fill your heart with gladness. Smiles to all and donut daze!
You never know what you never know. I have been saying that since I was a little kid. I often wonder what I am missing. I think back to lessons I’ve learned or classes I took. If you miss a day or you aren’t in the right place at the right time you may not learn something that will help you on your journey through life. That’s why I share our daily challenges and our beautiful victories. It’s sometimes hard to imagine that a banana has caused more meltdowns than stoplights but maybe not as many as when the internet goes out or the door not being at the correct angle when it is closed or even a drawer not pushed in properly or even the lights being on at the wrong time of day. Honestly, I’m not sure which one tops the charts. I do know that our journey with autism isn’t always easy to explain but the love sure is. And I share so hopefully others know they are not alone in this journey. Today was one of those days that we slept pretty well, Owen screamed when he woke but quickly realized he didn’t want to, and then crawled back into bed with me after we did all our good morning moments. He was ready for school but he was not ready to put his shoes and socks on. Once we got through that we were out the door. He kept talking about “tractor Tuesday” but I told him we would have to see what the weather was like when he came home. His teacher sent me a message that said he was distracted by his tooth today and asked me about it. I told her I completely understood. Before he left for school he wanted his “tooth hand” to pull it out so it could go under his Spider-Man pillow and we could take it to the pool in the summer. I stood on the porch waiting for his bus to come, wishing the rain would stop so he wouldn’t get upset about my blue pants getting rain on them. When he got off the bus he first asked about the tractors and then if we could go for a walk. As we were walking up the steps he said, “pull a tooth.” I rushed him inside and I was glad his tooth and the tractors distracted him from the rain on my jeans. After a while, he stopped talking about his tooth but he sat under a blanket as well. He told me that he was going to school first tomorrow and then the dentist so we’ll see how the night goes. He let me feel his tooth and it still seems pretty connected. He was letting me move it. I said I can’t twist it. He said, “twist it twist it.” It was hanging in there. If it doesn’t come out by the time he goes to school I’ll send him but then make an appointment for him and take him tomorrow. He fell asleep but it was not without several conversations about his tooth. I pray it works itself out but I’m glad that he wants to go to the dentist if it doesn’t. I know it will calm him when it is under his pillow and the “fairy brings a lollipop.” The laughter of today brought joy to my soul. He played his guitar for me and he even sang a couple of songs. In life, the challenges are there but focus on the victories no matter if they are big or small remember you’ve won them all. Smiles to all and donut daze!
I woke up more times than I can count last night. One of those times is when Owen crawled over me to get into my bed. We fell back asleep but it wasn’t long before I got up to go to the bathroom. He screamed “white bed.” I told him I was just going to the bathroom and then I would be back. Thankfully he stayed in bed and went back to sleep. It seems like the time change is catching up to me. We got ready for school and had to hurry. Time seemed to speed up for us this morning and we were rushing to get out the door. I have been encouraging him to put his shoes and socks on by himself and this sometimes takes more time. I don’t plan well for this. We weren’t outside very long and the bus turned the corner. He was excited to see it. Mondays always feel like he has more pep in his step when he sees that bus. It’s like he missed his old friend and they are reunited. He came home and told me he was going to the big slides and ready to go for a walk. I said what about your doctor’s appointment and he said his doctor can watch Mickey Mouse with him. He had a good appointment. I like the idea of adding eye therapy in because it is encompassing body awareness as well as eye control. He likes going to see the doctor and it feels like he will learn from her. She showed me exercises to do with him and each week we will build on them. We went through additional questions and she will add exercises as we build his goals. I think setting these goals with him will help me as well. I also think anything like this gives him the experience of how to interact with different people so on all levels it’s good. On the way home, he told me “tomorrow is tractor Tuesday” and he said, “let’s ride.” I thought that was so funny. I’m not sure what happened to treasure chest Tuesday but maybe it will come back. He also told me one of our friends is going with him to ride. I’m not sure that our friend knows he’s coming though. The night was pretty quiet and sleep came as quickly as our morning seemed to go. I’m thankful for another good day. I also got it worked out with his doctor that we don’t have to do his blood work yet and for me, this is a relief. I don’t want him to be stressed by this and then it causes even more anxiety. Right now he fears no doctors and I don’t want this to cause him to associate anything bad with going to the doctor. And thankfully his team all agreed. His laughter filled the air tonight as he watched videos but I could still hear the concern in his voice for his loose tooth. He wanted to use his “tooth hand” to pull it out and put it under his pillow so he could get “coins and lollipop.” His bounty is increasing. I’m thankful that the “fairy” is part of the family now and he is happy about it. Acceptance of where we are allows us to move forward to a new day. Be in the moment and know that you are incredible. Smiles to all and donut daze!
He said, “dear God.” I love mornings like this. Owen got into bed with me around three but then slept until after six. He was singing Humpty Dumpty in all the languages and smiling nonstop. We have been working on gentle hugs and he is starting to get the hang of it. This isn’t an easy concept for him because he loves the input he receives when he pushes into me with all his might. I always give him a big kiss on the top of his head or cheek. He actually gave me a kiss on my cheek. I pray all the time sometimes roaring loudly for God to help me. Owen stood in our kitchen and it was very soft but he said, “dear God.” It made my day. We talk about God and why we go to church so I love that it was another connection. He requested a “sausage dog” for breakfast. I didn’t have any so I made him a sausage and a cheese biscuit and he ate it all but I love that he asked for a food he wanted. We got ready for church and he did great the whole way there. I told him he needed to look people in the eye and if he wanted to talk about blue pants he needed to say, “blue elephant eats peanuts with Goofy” hoping this would redirect his thoughts. It seems like when I’m sitting in church it’s where I cry the hardest for my brother. Be brave in the sorrow of grief I remind myself. These moments that capture your heart will help you grow in love and wisdom to carry on. Be strong, be still, be thankful for the road ahead and the memories of yesteryear that now hold a special meaning in your soul. I wonder when my head will stop pounding from the reflection of the day he was gone. Grief is a beast. I sat there with a completely wet face. I didn’t wipe the tears away. I needed to feel them. I told him that after church we would get our lunch, come home to eat it, and then we could go to the “party slides” as he calls them. It took us numerous hours to get ready to go. Between eating his lunch in phases and having bathroom issues we finally got going. I had put socks on for the playground and it was hard for him to rationalize through. He wants me to wear what he expects. We got to the indoor playground and he had a blast. He thought our friends were there so he tried to go to the room that they had the birthday party in but I tried to explain they weren’t there. He played for quite a while. I showed him all the video games and other options. We played them for a few minutes and then he went back to the slides right before we left. As we were leaving he said he wanted pizza. I had been asking him but he didn’t want earlier. I think it might have been a ploy to keep us there. I told him we could go back next Sunday right after church and have lunch there. Hopefully, that will work for us. We had a few moments but today was a good day. Thankful for his smile and excitement at the slides. Love is the bridge for tomorrow. Smiles to all and donut daze!
I often wonder how late Owen would sleep if the outside world didn’t wake him up. I was thankful for this morning. He slept until after five. And it was night and day from yesterday to today. There were a few little moments but I also didn’t rock the boat and the rain wasn’t loud. He woke up and started singing almost immediately. He went to his tablet but I suggested the bathroom first. It wasn’t his favorite option but he went. He asked for chips and chocolate milk. I said, how about some cereal? He ran off before he answered. I started fixing my coffee and his milk and he came back to me. This time he said, “cereal and chocolate milk.” I said how about saying please when you ask for something and he quickly said please over his shoulder. He was saying please every time he asked for something but now he rarely says please and thank you. He was funny this morning, making references to videos he was watching or telling me facts about animals he knows. He is going through a phase where he tells me what animals he is going to eat and I know he is just saying animals that he thinks are funny. He said, “eat a lizard” and then he laughed. He moved on through gorillas, crocodiles, bees, and the list kept going. “Dog says woof woof that’s an animal,” he sang out. He’s like my budding little songwriter. He will make up words or combine words he hears from numerous songs together. We were going a little later to my mom’s today but he was ready as soon as he woke up. He put his shoes on but he put them on the opposite feet. I’m not sure why he has started doing this. He says, “hold up the tongue” when he puts them on repeating the words I’ve said to him many times. Thankfully it was only misting when we left our house and he was too focused on getting to see grandma that he didn’t get upset when he ran up to her porch in the heavier rain. He had a great time there and on our way home he talked about going to church tomorrow and wanting to go to the park with grandma. We had told him we couldn’t go to the park because of the weather but he still wanted to go. He wanted to drive by the windows he likes and he said, “drive me by the windows please” so I told him I would since he said please. I then asked him if he knew why I was driving him by them and he said “because I said please.” I was excited for that victory. I’m not sure why but he pointed out all the air conditioners on the way home and I thought this feels like a new trend. I’m thankful for a good day and his laughter fills my heart. Find your inspiration and know you can do amazing things on your journey through life. Smiles to all and donut daze!
Rain screams, they started loud and they started early. He wanted me to “turn the rain off.” There are not enough words in the world for me to be able to explain to Owen that I can’t turn off the rain and I can’t do anything about it. My heart rides the rollercoaster waiting for life to explain life to me. It’s hard knowing that raindrops are going to create screams that echo through my mind for days. When did rain become so hard? We woke around five and the rain was loud. This was all too much for Owen. I knew today was going to be hard. It was the second day out of routine this week. I wish I could help him through these moments. When the screaming stopped he didn’t want me to go to the bathroom. I told him I had to. When I came back he slept a few minutes more but that only emphasized the rain one more time. He started yelling about the seasons. He said, “it’s fall.” I knew where this was going. It’s not supposed to rain in the fall. Fall is about leaves, pumpkins, and turkeys. I tried to distract him which actually also emphasized that it was raining. He talked about it not being spring or summer. We could have gone to breakfast or lunch with grandma but it was raining plus our blue pants would get wet and he was afraid we were going someplace on a trip. I was able to calm him down but we were not going anywhere today and he reminded me of this every few minutes all day long. I told him we were getting groceries because his chocolate milk was coming. This meant that the “manilla milk” I poured him then got poured down the sink. He told me he wanted me to use a chocolate milk spoon to make it but he kept pouring out the milk. “Don’t go away there will be chocolate milk,” he said like he was the announcer for a commercial. Finally, the “chocolate milk man” arrived and he wanted me to pour him a new glass which promptly got left on the table without him drinking it for at least thirty minutes. While I was making his waffles I stood trying to exercise with him. I wanted him to bend in half and touch his toes. Instead, he sat on the ground touching his toes. I had to move him but he still didn’t get it and sat back down. We work on new movements all the time but it is something we have to go over numerous times before he understands them. He was very concerned about his teeth. He is about to “lose a tooth” and also “growin it in” for another tooth. He told me the “fairy” was coming and bringing him another lollipop. As the day went on he was fine as long as I sat and didn’t mention doing anything today. If I said anything he would say he was going to grandma’s tomorrow and that was it. It’s supposed to rain all day tomorrow too. One day at a time and I can pray that the rain holds off when we need to go anywhere. I think we both ate all day it seems. I’m thankful he calmed by night’s end and sleep came quickly. I’m glad for the laughs we did have and the mischievous smile he had while naming animals and singing to me in all the languages. Thai, French, and Spanish were the big ones for today. Believe in your dreams and know that you can make them your reality. Smiles to all and donut daze!
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AuthorI'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart. Archives
May 2024
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