Now that Rory is in preschool and the big kids have drop-off co-op on Mondays, I spend my Mondays deep-cleaning the house. Everyone who does not know me very well says, "Okay...but make sure you also do something for YOU on that day." Everyone who does know me says, "How exciting is it to get an entire day to clean?" The answer is: really friggin' exciting. It is a beautiful way to start the week. This Monday, Liam went to co-op not feeling so great. He took a while to decide if he wanted to go and was late and then had to be picked up mid-morning. In between all the running around and time on the phone, it was not the most productive day. When the boys came home, many tasks were still half finished. Liam went to take a nap, Dexter hopped on the computer, I started folding the laundry and Rory went off on one of his exploratory adventures. Since starting school, it is almost as if he feels he has to make up for lost time because he flits around the house all afternoon, pulling books off shelves and dumping over bins of Legos at a frantic pace. Every few minutes, I feel an internal nudge to go and check on Rory. He may be three years old, but developmentally he is still a baby and we are still fishing tiny things from his mouth and rescuing him when he gets trapped in corners. We have to keep doors closed because he will not hesitate to splash in a toilet or empty a garbage can. Sometimes, living with Rory reminds me of why babyhood is generally such a brief period in a person's life. It is exhausting. As I walked down the hall, calling for Rory, he did not respond. He will usually make a noise or come crawling to find us if we call his name. I checked one room and then another, but did not see him in any of his usual places. I turned the corner and noticed that someone had gone into my bedroom and left the door open. I felt my stomach drop. I started running, praying that whoever had entered my bedroom had not gone into the bathroom. The master bathroom is one of Rory's favorite places to cause mischief. It also happened to be the place I had the bathtub filled with soapy water, soaking the dirty mop- one of the tasks I had not finished before the boys got home. The door to the bathroom was cracked open, just an inch. Rory loves baths. He comes as fast as he can crawl the minute he hears the water. He will pull himself up on the side of the tub as you prepare a bath for him and, if you don't watch him, he will drag himself right over fully clothed because he is so eager to get in and play. I have found him playing in the empty tub when one of the boys forgot to close the bathroom door. The problem is, he does not have the gross motor skills or cognitive awareness not to drown. Even in an inch of water, he will sometimes plant his face directly in it and then breathe, coming up sputtering and coughing and totally confused about what happened. I have nightmares of finding Rory in water. Images of him floating in the mop water kept forcing their way into my brain as I slammed the bathroom door back. I had to convince myself to keep my eyes open as I was so afraid of what I would find. As the tub came into view, without Rory in it, my legs went weak and I started to shake. As I walked out of the room, Rory came crawling down the hall, smiling at me. I could not stop myself from crying. He held his arms up to be held and I picked him up. "I just wish I could stop worrying you were going to die all the time!" I found myself saying to him. "I just wish it was different." He smiled and clapped and pulled my face to his for a kiss, completely unaware of the fear and adrenaline coursing through me. Later that evening, Liam was chasing Rory up and down the hallway with a toy dinosaur. They were growling at each other and Rory kept bursting into fits of hysterical laughter. This made Liam laugh too. Every once in a while, Liam would collapse next to Rory, pulling him into an embrace and nuzzling him, then Rory would growl and the game would start all over. I told Liam it was time for Rory to go to bed and they gave each other good night snuggles. After I picked Rory up, Liam looked up at me and said, "Mama, what is your absolute favorite thing about Rory? My favorite is his playfulness and his cuteness." Then, without waiting for an answer, he turned to Rory and said, "Good night, Rory. I love you! Have Rory-saurus dreams!" He gave him a hug and walked away and I was left standing there, holding Rory and thinking that, when it comes to Rory and his delays, I need to be more like my seven year old. Liam never wishes Rory to be different. He never wishes life with Rory to be different. He never worries about what Rory's future may hold. He accepts and embraces his brother for exactly who he is. He never compares Rory to some mythical version of who Rory could be without CP. He does not ask Rory to change so that they can relate to one another, he changes so that he can relate to his brother. He interacts with him in the ways Rory is able to interact and appreciates it for what it is with no thought to what it could be. He never sees anything Rory does as less than optimal for Rory. As a mulled over this idea, rocking Rory to sleep, it occurred to me that it is not just Liam's joy in Rory that I want to emulate. It is that... even when CP comes crashing into his world, forcing him to sit in a waiting room for an hour or taking Mama's attention away for the day or making him explain to kids on the playground what is wrong with his brother's legs, and it sort of sucks and he sort of hates it, he just accepts it as part of the deal and moves on with his life. He doesn't ever say that he wishes things could be different. He just acknowledges that a particular part of Rory having special needs is not fun and then he gets over it. Liam is going to be a better person for having Rory in his life.
It has taken a while to get to place where I could say that because it always felt like treating Rory as a sacrificial lamb or a thought experiment. As if.... Rory exists to make us better people or some other inspiration porn bs. But, the truth is, you can only see Rory as a sacrificial lamb if you see Rory as less than. When you see Rory as complete and whole in who he is then when you say you are a better person for knowing him...you are just saying you are better for knowing him. Rory is different and sometimes that sucks but mostly Rory being different makes us better than we would have been if Rory had been born without cerebral palsy or global developmental delays. Everything in this world has upsides and downsides. When we can accept it all as part of the deal and move on, that is when we are being truly accepting. If we sit around and pretend that all the crappy parts of something are actually not crappy because we don't want to be offensive then we are just being fake. This is the sort of acceptance that makes my stomach turn these days. When people act interested and invested in my kid just because he has a disability- which becomes painfully obvious when they couldn't care less about the other two. When people use all the words they read online that they should use when talking about my kid to make me feel as if they are sensitive and aware without ever forming a genuine connection with my child. Some of the people that love my child the absolute most, that would probably throw themselves in front of a bus for him, don't use or know those words, so you throwing them around us means absolutely nothing. And if you don't think that every single person you use those words with can't see right through it, outside of the other people disingenuously using them, you are kidding yourself. When we can acknowledge a human being as a human being- nothing more and nothing less, when we can say "it sucks that you are three and that I am still worried about you drowning in the bath tub" without feeling guilty because there is no underlying rejection concealed in the thought, when we can find our absolute favorite things about who a person is without having to tip-toe around all the things we wish they could be..... THAT is genuine acceptance. I am not there yet. It feels a bit like learning a second language. I constantly find myself having to think things through and translate things in my head as I learn this new way of looking at the world. But my children are truly fluent and that is because they have each other. Cerebral palsy has taken some things away..but it also gave us that gift. It is a complicated gift but.... I am learning that all the best gifts are.
0 Comments
We spent the morning picking apples at Wheeler's Orchard. It was our first time and I feel as if we have discovered hidden treasure. It was only an hour away from home. The weather was beautiful. The fruit was delicious. We were the only pickers in the orchard. The farmers were endlessly patient with us. There were animals to visit and fields to run in. It was a perfect morning! We have absolutely found "our" apple orchard. Our seasonal living rhythms are beginning to take shape. My next step in learning to live in harmony with the seasons is to begin to learn processes for storing the food we gather for later. I am a complete beginner but I am hoping to learn all about canning and preserving this year. I also hope we will be able to work out a storage solution that will allow to start stock-piling more food! Until then, we have only been picking enough to enjoy for a little while. A peck of apples picked by hardworking little boys will provide a couple of pies, tarts, maybe some homemade applesauce or butter and at least a hand full of fresh apples for munching on over the next couple of weeks, of course. Our favorite part is the still the experience though. There is nothing like spending a crisp, cool autumn morning at the apple orchard with our friends. Until next year, Wheeler's!
Rory Emerson,
I have always said that I would make decisions for each of my children based on their own needs. I have always said that I would be flexible. I have always said I would not get so married to an ideal that I overlooked what was best for each child. I always said.... ....but you are the first one to put me to the test. You stretch me, little one. More than anyone else, you stretch me. You pull me out of my comfort zone. You push me to stand up and speak out and say "no" or "I don't agree" or "I want a second opinion" or "this is what we need." You make my head spin with worries and then laugh at my silliness and remind me that my worries fix nothing. You sweep away all pettiness and triviality and force my attention to the things that matter in life... which is so, so much less than I ever could have imagined. So little of what we think is important is actually important but what is important is so much more important than I ever knew. You taught me that, Roo-Bear. You and no one else. Today, I dropped you off at preschool for the first time. Today, I dropped anyone off at preschool for the first time. It sucked. It really, really sucked. We have been a free spirited family giving the middle finger to all things conventional for so long that it felt like a part of my identity was dying as I walked into that school building and handed you over to a public school teacher. You follow a typed schedule now. It is posted on the door of your classroom. You slept on a plastic mat for an hour this afternoon and you ate a Nutrigrain bar for snack. You have never even seen a Nutrigrain bar before. And that seems a small thing to be obsessing over but I just keep thinking about that stupid Nutrigrain bar. I didn't see you for hours. When I picked you up, you crawled to me and you hugged my neck. I wanted to ask you all about your day but I couldn't. You couldn't tell me anything and so it is like seven hours have disappeared into thin air. I read the information sheet your teacher gave me five thousand times, hoping that memorizing everything it says will mean I wasn't really away from you all day long. "Rory had a great first day of school!" it declares perkily. But who kissed his cheeks all day? Because they are really used to being kissed. Did anyone tuck that one unruly curl behind his ear when it got into his eyes? Did his fingers get stepped on? What did he play with? Did you notice him signing "bird" when he saw them outside because it is subtle but he knows how to sign it and he always points them out and he is so proud if you recognize that he did it. How many times did he laugh? Did he miss me? Did he know how much I missed him? Did he feel like he was missing out? Did he feel like I was giving up on him? It was also amazing. When we walked into the classroom this morning, your eyes lit up and a grin spread across your face. Your new friends kept bringing you toys to look at and you didn't even notice when I left. I came early to pick you up and I watched you through the window and you were sitting in your teacher's lap and looking at a book for longer than I have ever seen you pay attention to anything. You flapped your hands in excitement over and over and the smile never left your face. Your classroom is cozy and there are so many things for you to do. When I came in, you were happy to see me...but you cried when it was time to leave. You are going to be so excited to know that you get to go back again and again and again. I don't know if the wonder of it all will ever wear off for you: friends to play with and toys to explore and a playground to play on every day. And its all yours. It is all for you. Also, for the first time today... for the first time since you were a tiny baby... I got to just be your mama. I was not a therapist or a teacher or a doctor. Our moments were not teachable moments. I did not have a checklist of things to practice. I fed you dinner. I gave you a bath. I rubbed lotion on your back. I snuggled you. I read you a book. I tucked you into bed. I was just your mama. It felt really good. I always said that I would do what was best for you. I always said I would be flexible. I always said I would put aside my own desires to meet your needs. Today, you taught me that I really meant it. Because it was hard and I did it anyway and I know that it was the right thing to do. Rory, you are a gift to me. Even the hard parts of being your mama- especially the hard parts of being your mama- are my greatest gift. You delight me. You are magic. I love everything about you. Baby.... I love every single thing about you. I love your milky skin and your bunny rabbit teeth and your long skinny feet... and your diagnosis. I see more beauty in the world because of you. I see more value in people because of you. I let go of ugliness more easily because of you. I stand up for what is right because of you. I forgive people for their flaws because of you. I forgive myself for my flaws because of you. I refuse to waste my energy on pettiness because of you. You are a gift to me and I hope more than I have ever hoped for anything that I do right by you. Rory Emerson, this is your third year on the planet and... I think that this year is the year you are going to soar. I love you. I love you, I love you, I love you. Happy Birthday. - Mama |
WHO AM I?
I am Michelle: a wannabe hippie in love with a bonafide geek. We also spawned. I spend my days with our four wild, beautiful boy children and I overshare about our life online because I am a Millennial and that is what we do.
|