Everyday I try and forget my daughter is different, and often this is easily maintained this sense of normality in the un normal. All the things we deal with are our reality and normal, it is just the way things are around here at our place in our lives. What is normal anyway people ask, normal is being able to do the things the majority of people can or am I over simplfying it?. If that is a correct definition then we are far from normal. I know my family is un normal, we are very aware of our daughters “issues” and we are fully aware that she cannot do things most normal kids can. We see this everyday over and over again but I must stress yet again that if the abnormal is your normal then as far as you are concerened your ab normal is normal, does that make sense?. Sometimes the ab normal is glaring and I find myself noticing how ab normal my family is, at the park when we watch other kids play is the best (or worst) example. I hate going to the park, it provides an hour or so of in your face reminders that our kid is different on many levels.
So each day we live in our normal ab normal life and go through the dialy motions and rituals that make our ab normal normal become just another ab normal normal normal day. This is ok, this life is ok and I am at peace with it 70% of the time (ok sometimes more and sometimes less it all depends on what type of day we are having). But sometimes the fact we are living a ab normal life is thrust at us in piles of paperwork, doctors visits and meeting after meeting with experts on a million different things. eye experts, speach experts, brain experts, therapists, support workers and so many others. Just let me say I think all our exopert experts are awesome and we are lucky to have them in our lives helping us to make our daughter be al she can.
Ok, so get to the point Kelly (talking in the third person is a sign of insanity). My daughter needs stuff to do normal stuff more normal like than if she did not have the stuff. She has stuff for her arms, her legs, her neck, her eating, her bathing and pretty much everything that helps her do normal stuff. I HATE THIS STUFF.
I hate this stuff so much, each time we get more stuff I get shitty, I go quiet and I smoke lots of cigarettes, I get grumpy. My daughters mother knows this so when we get new stuff she lets me get shitty and she lets me yell at the stuff, I hate it all. I am aware this stuff is needed and it will make my daughters life easier or better I know this and I am so happy we get the stuff but I still hate it. Today we got a chair, not a normal sit and eat dinner chair more a Star Trek super duper adjustable chair with levers, adjustment handles, straps, wheels and lots of buttons and gadgets. This chair is so my daughter can sit on the toilet, my daughter needs this chair so she can sit by herself and take a dump. Awesome, she can get a little more independant which is good news, the bad news that makes me really grumpy is that she needs a “machine” to sit and shit. REALITY BITES and sometimes when you pull your head out of the sand you wish you had just left it in there, nothing bad happens under the sand, I love the sand.
Every piece of equipment we get hits me like a ton of bricks, it removes the comfortable normal ab normalness in my life. It makes me face the fact my daughter is not normal, she is different and no matter how normal I try to make my ab normal life there are always reminders that things are ab normal. I hate these reminders, I hate the fact we need this equipment for something as basic as sitting on a toilet, I hate the fact I am so grumpy each time some new contraption arrives at out house. Please let me stay with my head in the sand a little longer, please?.
The seat arrived this morning, grumpy. BUT, making e even more grumpy is the other slap in the face your ab normal normal is far from normal normal arrived yesterday in the mailbox. We get accessed by ACC on a regular basis, thet visit our home and see what is happening. They look at how my daughter is geting on, what suport she needs, is there anything that will make things easier for her and us, and they write a 25 page report outlining everything they find. They talk to my daughters support workers, teachers and anybody who is involved in her care and therapy an dthey then write the report. I HATE THAT REPORT.
Oh dear, I am fueled with grumpy this morning and this post will no doubt reflect this, hang in there I get grumpier and then I will feel better for venting and we will finish with a nice cutesy moment to make us all feel better, much like tv news shows do, if you show a farting panda story after the plane crash stoty everyone feels nice and happy again aaaah.
So the report is an amzing insight into our daughter, her progress (which is amazing due to my partners amazing hard work) and it tells us how she is tracking against normal kids her age. Each area is given a number score, all the numbers are added up and we get a nice number to keep things tidy and easy to understand. We can then compare this number to that of a normal child her age, fuck. Ok, that is a awful report to read as it does compare my daughter to other kids and it shows GLARING gaps between what she would be doing (if she did not have her brain injury). I alays try not to compare my daughter to other kids, if you do this it will all end in tears. I am fully aware my daughter is different and I am comfortable with that, this is just the way it is. But soemtimes there are times when it is so very obvious my daugter is different, at the park is the perfect example. Asd son as you see other kids doing other normal kid stuff that she can’t do you always have a moment of sadness. I am sure this is normal and allowed?
When you get a huge report that puts these diferences into a number that you can compare with another it makes the diference between the normal and ab normal oh so very clear. There it is, in black and white on official letterhead so it must be real very real. My daughters score were awful, if it was the results from a school report she would be grounded for months. The numbers tell us how far from normal she is, she is a long way off normal maybe even further than I thought. It is all there, what she should be doing against what she is doing and let me tell you her number is way lower than that of a normal kid, she is not normal though is she. She needs a over engineered seat to go to the toilet, it adjusts so as she grows we can make it fit (how many years will she need it, oh god please let me put my head in the sand).
Today and yesterady I was reminded that my daughter is not normal, we are not a normal family. These reminders make me grumpy, well I say they make me grumpy but the anger is just another manifestation of another emotion, a terrible sadness. These pieces of stuff and reports are like a drill sergent yelling in your face “YOUR DAUGHTER IS NOT NORMAL!!!”. My daughter is not normal.
That makes me grumpy and sad in depths so deep in me I have no idea where they are, I just know they are. I will be grumpy for a few days, this is my routine and we all know it well. My partner will cry, she will get it all out and accept these things better than I will. I am ok with the fact my daughter is a different type of perfect, I just do not want to be reminded our ab normal normal is so very very far from normal normal.
Panda Fart.
KD
I used to use the word unique, it seemed better than special. Someone told me we should celebrate her differences and we try, we really do. But there are days when it all gets too much for her, for us. There are times when my self pity overrides everything and I get so angry at the world that she is so set apart from. She goes to a normal school and sits like a beacon of difference on her special chair with her writing slope, her special pen, her ear defenders on, everything screaming “look at me, I’m not the same as you” and she cries and I cry too at the unfairness of it all and wish things were normal, but their not. Her doctor asked me to define normal, I said anything but this. There are no words of comfort, no support, no magic that can change this and I try to vent my anger in so many ways that aren’t destructive to both body and soul. No one understands, they can’t and I feel like I’m stuck in a bubble and can’t push my way out. The future frightens me but sometimes the present frightens me more. We get by because we have to and we live from happy moment to happy moment trying hard to bury everything in between. We don’t need to be reminded of what is so obvious. We don’t want to be regarded as the saints of the silent minority who just get on with it. We want to be normal and scream and shout and cry because that’s what normal people do. Normal people express themselves and I’m damned sure that I’m normal and am equally sure my daughter is extraordinary and I will climb this mountain everyday for her. I know you do the same and that makes you extraordinary too xxxxx