Hemihyperplasia

Counting Tuesday. The nights have been better for Owen but for me not so much. I think, I rethink, I overthink, and then I think about all the things I need to think about again. Owen needs help with everyday moments. He can pull his shirt on and his pants but generally they are backwards or even inside out. He’s doing great about his socks and shoes but this too can cause problems. If the tongue folds into his shoe or the velcro comes out of the holder it causes him to scream and get upset. Buttons, snaps, and zippers are all still in the learning phase as well. We got ready for the bus and he saw that I had a dot of water on my pants from helping him brush his teeth. We had to quickly move forward. We got outside and he kept looking at how his pants were covering his shoes. He said, “help with the pants” as he was trying to move how they fell on his shoes. He lifted his pants back up and looked under his pants like he wanted to make sure his legs hadn’t disappeared. The longer his pants are the more problems they create. People often look at Owen and don’t see autism. That is a good thing but then they also question why he uses training wheels on his bike or an armband when we go bowling. Questions are always fine but the answers are not always easy.What does autism look like? What does a disability look like? How do you explain in a quick exchange what is going on when there is no quick explanation? If you look at me and I don’t move you don’t see the fact that I have hemihypertrophy -the right side of my body is larger than my left, arthritis, scoliosis, Hashimoto's, and walk as slow as molasses with a huge limp but I keep moving forward. I’m trying to work through it all and gain strength but this momma is tired. We all got something but it’s how we embrace who we are that makes us who we are. Kindness and grace are two of the most important lessons I try to teach Owen. We live, we learn, we grow, and throw lots of love in there. Nothing defines us until we let it define us. We can overcome the obstacles that are set in front of us and believe me I have to convince myself of this every day but we can do it. Sometimes I’m overwhelmed by all the sounds around me and want the world to be quiet for a moment. Not all of them bother him but I never know when the screams will erupt from the noises around me. I sit on pins and needles wondering what will happen next. When Owen came home from school he talked about all the places he wanted to go but they were all the places he wanted to go tomorrow so we shall see what happens tomorrow. He was calm most of the night. He played his harmonica and drum and then he read a book with me. In his prayer tonight he was thankful for his teacher and aides. I love how his daily prayer is building and growing like he is. A soul is broken by the memories they walked through but refreshed by the sunshine in the days ahead. Smiles to all and donut daze!

Even Sunday. The happy dance happened today. I woke by five, listened, and heard nothing but the sounds from the world around us. I fell back asleep even though I really needed to go to the bathroom I didn’t want to take the chance of waking Owen. Six o’clock came and I heard a noise. He was awake. I heard his tablet turn on and I suggested he go to the bathroom first. He did. He wasn’t thrilled about it but he went. Six o’clock in the morning, I’ll take it. We had an extraordinary morning. He was so happy and he was talking to me about everything. He came to me and showed me a video he was watching on his tablet. It was going through the alphabet and using pictures of items that started with each letter. He was telling me facts about each item. He then sat with me and we read a book together. He ate his breakfast late because when he got up he said, “no chocolate milk”. He wants to wake up and get his day started now it seems. When we started to get ready for church this was when everything seemed to change. He became concerned about the banana again. Only this time it was because I didn’t have one to take to church with him. He wanted one to go in his bag. “Not take a banana with you,” he said, looking for it everywhere and kept repeating he needed a banana. He started doing his mouse walk to the bathroom. He takes his hands and moves them up towards his chest and then hunches over, walking haphazardly around, slowly to his destination. At first, I thought maybe he was trying to mimic the way I walk since I tend to throw my leg out when I walk because of the hemihypertrophy and arthritis but now the movements feel more calculated. By this time we were running late and he was still very concerned about the banana. I rushed him through the process of getting dressed and tried to convince him we would get bananas later. So here we are again on the rollercoaster banana story. And now all day I’ve been singing the song Yes, We’ve Got No Bananas. On the way to church he went through his usual lines about the stoplights but today he told me that “pizza is triangles lights”. We just go with it. He started saying that stoplights were triangles and now he finds things that are shaped like triangles. He did great at church and when I picked him up after the service they said that he found one of the fake bananas and he wanted to throw it in the trash. I’m just thankful there were no meltdowns over it today. When we got home with his ten chicken nuggets and cheeseburger he devoured it and pretty much everything else I put in front of him for the rest of the day. He was very expressive and talkative with me for the rest of the day. I’m thankful for his interactions and wanting to play with me. Sometimes we wonder why me. And sometimes the wonder is why not me. I’m thankful for the gift of my son and all he has taught me. Cherish the moments you have for today is a blessing. Smiles to all and donut daze!

Courage Thursday. I fell asleep very early last night. So early that I woke up by midnight numerous times thinking I was late starting our day. I kept listening for Owen and I thought I heard him around four, but I didn’t. I finally got up to go to the bathroom and he still didn’t wake up. I think the sleepies finally caught up with him. He had a big day ahead with school, going on a field trip, and then therapy. I asked his teacher how his field trip went when I picked him up for therapy and she said he did fine but he really didn’t want to watch the play, instead, he wanted to see what everyone around him was doing and wearing. As soon as he saw me, he said, “black shoes”. He bends down to look at my legs and what I’m wearing. This action had been gone for a while but resurfaced a month or so ago. He used to stop me in my tracks with his sudden movements like that. I would be walking and he would dart in front of me, stopping to look at my legs. Sometimes he would laugh, sometimes he would pull on my clothes, and other times start screaming but he couldn’t express why. I never was sure if it was because he could see the size difference in my legs from the hemihypertrophy or if he was fascinated by my pants or even upset. Maybe blue pants were a thing then too. He did great at therapy today. I love how all of his therapists are working with him separately but they truly work as a team to help with all of his needs. He has made huge strides and I’m very thankful. When he was done I got him some chicken nuggets and we came home. The dude was hungry. He ate all twelve that I got him plus French fries and then a snack afterwards before bed. We had a full evening playing music, reading several books, and working on his writing. He acted like he did not like it when I attempted to sing but secretly I feel like he loves when I sing but only on his terms. I’m hoping he sleeps all night again but I’m not putting any eggs or chickens in any baskets. He had a little bit of a hard time falling asleep but at least he was happy. I’m thankful for how far he has come. Share your joy with the world around you because a smile is sometimes exactly what someone needs to change their day. Smiles to all and donut daze!