Sometimes I forget that Abby has something "wrong" with her. Lately its been easy to just accept her as her and our life for what it is. Without realizing it consciously I have hunkered down into our safety zone. Finding excuses not to mingle with the outside world. Sometimes I even get Panic Attacky anxious about having to do so.
We still go to our appointments...only four this week. But we don't do anything else. We have been going to see my Aunt and Grandmother but other that that there are no stores, restaurants, movies, play dates.
Today I wondered about all the reasons we don't....until we were walking out of a feeding clinic this am and I just had this whole sense of what we must look like and our surroundings and it was hard to swallow as I panted in the van trying to catch my breath and keep from passing out once we reached the parking lot.
When I can help it I walk Abby in and out of therapies and appointments. Its hard on my body but I do realize she doesn't want to be in that chair and she doesn't get the exercise a typical kid gets just by being a kid. Walking Abby is difficult. Picture trying to walk the Tasmanian Devil in and out of hospitals and clinics. She is babbling loud and incoherently. She is spinning,dropping,penguin crab walking, Leaning,stopping or falling backwards to look at the sky. Its hard on me and I hurt all the time but I do it. Her hanging on to anything that resembles normal. Anything that she CAN do no thanks to Rett is much more important that my aches and pains. So many children with Rett Syndrome cannot walk and I know we are blessed. I will not take it for granted.
The hospital was busy this am. Its not a thing that we Special Needs Moms talk about but we don't make eye contact with other people. Not you Normies anyway. We would rather focus on our children and the best way to get from here to there than see you staring with your mouths dropped open. We don't want to see you grab your child and get them out of our way. Not as a courtesy but like you are afraid we are going to get some on ya or like you are shielding your child from having to see something horrible. I did get one pity smile from a woman sitting alone. I didn't smile back. I just focused on the door. A little mad at myself that I had let my guard down for that 30 seconds. I know better.
I also know what me must look and sound like. I do understand the open mouths gape. The Holy crap what the hell is up with that kid look on your face. I get it. I don't know and cant say how I would of reacted if we had not been thrown into this nightmare. Sitting wherever while a girl makes the weirdest noises. You turn your head and she is beautiful. Smiling at her mother like she hung the sun, moon and stars. Thinking its so sweet the way her mother holds her hands. Then there is the shock as she starts to rock back and forth. What the hell? She's humming loudly. Almost like a chant. Boogah woogah lakka ummagah nah. Over and over and over. Occasionally a hand will get away and pull her mothers hair or slaps her in the face. Wow she is really loud. OMG her Mom just let go and she walked, stepped fell to the right like she was in a room where the floor tilted only for her. But she looks so normal. Oh no she's drooling...and so are you at this point.
We do understand. We don't like it but we do. At least I do. I just don't want to see it.and I dont want it to be us. Your reactions kill me. As kids we were told not to stare and we didn't. The only time we saw someone in a wheelchair was if they were a Veteran. You could explain a Veteran to a child. You didn't see the kids at school. Hell we didn't even know they were there. It seems weird to me that there were always disabilities yet I remained completely unaware until I was grown. Where were these kids? Was it easier to hide them away or keep them at home?
Today in the world of political correctness we can now live the lives of normal people right along side the rest of you. But just so we wont sue. Most of us don't.
Its not you completely....although Id love to have some one or some thing to blame.
Stores- Fluorescent lights are a bitch. Way too bright and there is that hum normies are able to tune out that our kids cant.
There are people they don't know coming towards them and moving in every direction. There is a voice from nowhere over head. Some beeping.We are moving, we are stopping..more beeping. Abby deals with this by making damn sure she hears nothing but her own voice....They call them Silent Angels....WHAT?
Restaurants- Light, Noise, Weird smells...Moms nervous. Trying to focus on the child while people stare. Whats the best way to deal with this environment? By losing your bowels or vomiting apparently. Good times.
Birthday parties- There arn't many of those. People will usually invite you once. Until you show up and the event turns from a day about your kid to a day about mine. Everyone trying to be nice and include them that they go too far or our kid gets overwhelmed and freaks the F out.
Church-Wow church. At others peoples houses I have observes one parent or grandparent staying home with the SN kiddos. Its easier. You cant leave your kid in kid Sunday school or child care. Most times the rooms are up or down stairs or they just don't have the ability to care to for the SN kid. When you take them into church they will spend the entire time....or at least mine will, yelling over the preacher or there goes the bowels again. Something about that little room and the echo and the confined space. I am embarrassed for her, for myself and for you to have to sit there and listen to a kid farting like a beer guzzling frat kid on an all bean diet. And the kid that absolutely will not fill her pants at school or while we are on vacation has absolutely no issue with doing it on an airplane, in a church or in a restaurant. I appreciate the comforting touch to my arm...cept I hate being touched but I cant punch you in church now can I? Pretty sure its a rule. The worst part is the pity. Stop pitying me. Hi. How you doing? Tousle her hair. Don't stop and talk to me like its a Barbara Walter interview and you are just waiting for me to cry. Want me to cry? I can do it. Any moment in time at any point in any given day. Id just rather not.
Home-Home rules! If she is tired she can sleep. If she had to go potty she can. If she wants to be fed by a tube into her stomach she can. She can do that while sleeping or sitting on the potty. And Dora is there. Dora is there all the time. She lives in her living room, bedroom and sometimes Dora even lives in the bathroom. No one makes her Mom sad at home...except the bill collectors and hey we have caller id so suck it right? At home nobody stares at her..Cept for Mom. While she's sleeping. Only thing better than Home and Dora is Mom. And at home Mom isn't crazy...Just don't ask Dad.