I wanted to take a minute to walk you through the life of a girl with Rett Syndrome. This is a run through of things Oaklynn might have happen on a daily basis. These are things I am sure go through her head. Put yourself in her shoes.
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Imagine waking up at 4am and lying there for a few hours because no one knows you are awake. Your mom comes in to get you up at 7am and puts you down to play while she gets breakfast ready. You sit there trying to play with your toys and get really frustrated because your mom forgot to turn your favorite toy on. Mom just assumes you are fussing because you are hungry so she doesn't come in because she is trying to get your breakfast ready. So you just sit there with nothing to do while you wait for mom to make your breakfast.
You eat breakfast and then have therapy. Therapy comes every morning (sometimes 2x a day) and some days you don't feel like doing it, but you aren't able to express that you wish you could skip a day. During therapy mom is talking to the therapist and you start rocking back and forth because you want them to pay attention to you. You really want to tell them that you want to walk in your walker today around the house, but you can't.
You enjoy playing with your sister (which really just consist of watching your sister play) because it gives you something entertaining to watch. Sister starts sucking on your toes. You can't move somewhere else or tell her to stop so you try to kick your feet to keep her away but it just doesn't seem to work. You can't hide your favorite toys from sister so she doesn't drool all over them either.
Mom comes in to play but she only gets to play for a little bit before she needs to take sister to feed her and put her to bed. Once sister is in bed, mom and you eat lunch together. It usually takes you an hour or so to eat a meal. It is hard for you to chew things. It gets very exhausting so quickly. Because of Rett Syndrome, you can't control the things you do with your body and after a while, it gets to be a lot of moving that your body makes you do (rocking, teeth grinding, arm flailing . . . ). So by the time you sit down to eat a meal, you are just too exhausted to chew.
Mom gets you up and you go out to run errands with her. You can't control your arms so you are always hitting yourself in the head and pulling your hair. You don't like doing that and you wish mom would put your braces on your arms to make you stop. You start fussing because you have a headache from pulling your hair so much. Mom doesn't understand why you are crying. She just figures you have had enough of being out so she takes you home (although you really enjoy being out and wish you could have stayed out longer).
You get home and mom lets you watch your favorite show Mickey Mouse Clubhouse with sister while she gets dinner ready.
Dad comes home and you all eat dinner together. Mom and Dad are talking during dinner and you start rocking back and forth because you really want to tell Dad about something cool you saw while out running errands with mom. You really wish you could tell dad all about your day but you just sit there and listing to mom and dad talk. After dinner you get to play with dad. While playing, you smash your finger in a toy and start to cry. Mom and dad try to figure out what is going on. They check your diaper, try to give you a drink, try to feed you, try to see if you are gassy . . . they pretty much try it all. While they are trying to figure out why you are crying, they keep touching your finger (the one you smashed) and it hurts really bad. Finally the pain starts to go away so you stop crying. They get you ready for bed, give you your bottle and when that is finished, put you down for the night. Takes you another hour or two to fall asleep. Sometimes you even wake up a few times at night and just hang out until you either are able to fall back to sleep or someone gets you up in the morning.
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Imagine throughout your day, the things you do that a girl with Rett Syndrome can't. Things such as scratching your arm when you have an itch, wiping your nose when it runs, brushing the hair out of your eyes, re positioning yourself when your leg starts to fall asleep, taking a drink when your mouth is dry, holding a loved ones hand, saying I love you. These are just some things we do on a daily basis that we don't even think twice about.
Next time you have an itch, try not scratching it. Trying going an hour without speaking to see what it is like being able to understand everyone around you and know what is going on, but not be able to talk back.
THIS IS RETT SYNDROME