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.
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Sometimes, before dawn....when my brain is still cloudy... I hear his feet slapping down the hall in dinosaur slippers. Sometimes, before dawn, when the door creaks open, I see him standing there, curls disheveled and rubbing sleep from his eyes. Good morning, he says... or I'm hungry... or I wet the bed...or any thing at all. His shirt is always bunched up above his belly button. His Raggedy Andy is always shoved under one arm. The other arm hangs on the doorknob and he waits for my smile before crawling into my bed. Sometimes, before dawn, I see him there so clearly in that one second between the door creaking open and swinging wide that it is as if an entire lifetime is lived. An entire lifetime of... Two years. Ten months. Three weeks. Three days. One thousand hugs. Ten thousand kisses. So, I know him. I know it will be him. And when it is someone else, it takes my breath away. My heart swells with pride and love a thousand times a day. It breaks. It bleeds. It sinks to the floor. It turns to stone and then it melts and then it starts to swell again. They say that one day I will get used to this cardiac roller coaster ride. They say that one day I will tune it out like the hum of the refrigerator. I believe them. I just wish that day was today. How can I mourn for a boy I have never met when I have golden ringlets and hazel eyes and pure love right in front of me every, single day? I do not know the answer, but They say one day you learn to live with the guilt.
I don't know if I buy that one. Maybe it is because Once Upon A Time, I carried a boy under my heart- a boy that would crawl into my bed before dawn in dinosaur slippers. He was growing and becoming and then one day he just wasn't anymore. In one moment, the future was rewritten ...like dominoes falling. What was I doing the moment he was stolen? Was I sleeping? Laughing? Eating a sandwich? And some of Them say that it was always meant to be and some of Them say that the only disability is a bad attitude and some of Them say that my grief paints disability as tragedy and it is damaging and I have no right to these feelings at all. Maybe they could just tell the feelings that and they will give up and go away. The doctors say it is like cult-a-sacs in the brain. The blood just didn't make it down a few of those one way streets. Or something. They don't really know. After tests, and tests, and tests, and tests.... It is all essentially a really expensive shrug. But they say the thing about the cult-a-sacs.... and I picture my boy, in his dinosaur slippers, wandering the suburbs. Lost in a sea of mini-malls and beige split-levels. Little boxes on the hillside, Little boxes made of ticky tacky... He is lost there and he can't find his Mama... And I spend my days mourning him and looking for him and falling in love with the fairy child that replaced him... and then missing him again and then not missing him at all and then catching glimpses of him in a cheeky grin or a car seat tantrum and then being angry that I don't get to see him more... and then thinking how silly it is to miss someone that never was.... and then wondering.... Could I find a pair of dinosaur slippers that would fit over AFO's? And this is what it is now. I don't know when it will be different or if it ever will or what They have to say about that... But today a bunch of specialist tried to make my baby do things that he can not do for a couple of hours and it hurt. In a month he starts school and it feels like losing something and maybe gaining something too. Twenty minutes ago, I caught him ripping up a book and he threw his hands in the air like a bandit and belly laughed and it was perfect. And I ordered an extra wide pair of dinosaur slippers online. |
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.
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