**long post - grab a flask of coffee, your lunch and a mid afternoon snack!**
In 9 days she becomes a teenager.
I just can't look at her and place her as your average teen.
Cos as you know, she isn't your average teen.
But I really want her to be.
Desperately.
Even if it was for a day.
But what she is, well, she is just so teeny tiny, fragile, behind, grasping, thriving, reaching, uncertain, forgotten, charming, loving, nonchalant, kissable, unaware....... words you would generally use to describe a child whose issues belie them.
And yet I punish myself as I thumb through various blog posts about parents gleaming from the pride of showing off their tall, developed and mature adolescents and I try to hold back the tears as I try and match that confidence with this little parcel whom I couldn't be more proud of but somehow not feeling like we fit that picture perfect, chocolate box jigsaw.
Its a general fact that mothers of children with issues actually have a good knowledge of why their child is different and unfortunately we have been in limbo of not knowing for too bloody long. So I think
Im allowed to have a good whinge and moan about it because lucky for some people - they have support pertaining to their
childs issues.
We get absolute bugger all. Not a sausage. Absolute zero.Do you know how many times I sit and watch kids of
Ellies age walk past my car everyday when I pick her up from school wondering how well they hold themselves and how fast they are? How tall they have become and taken over even my own height? They scuttle by carrying heavy bags with a posture of teenage deportment, walking free all the way home and getting up to the tomfoolery we all learned great lessons from - the dares, the pranks, the mischief that shapes our
teenagerdom with war wounds from the failures and highs of such incidents.
And my child who has become so dependant on us that I don't even know where the fine line of interference and general help divide? She is a small girl who could melt stone hearts and yet has never, ever walked home from school in her life - hell, she hasn't walked more than 200 metres out of my sight when she has been in my immediate presence. This girl doesn't know how to get to the local shop nor fathom what change she would get from a £1 coin should she buy sweets; she might not even know the cost or how many sweets she could even get for a pound. She can't brush/wash her hair, she can't write legibly, she can't swim, ride a bike or tie shoe laces. She can't tell the time, she can't hop, skip or jump neither. She can hardly carry her own school bag, I still fasten her buttons as she can't quite manage them and I often finish off her sentences when she is being shy in front of company. She has played out less than a dozen times in our street in all the 5 years we have lived here (you just don't see her peers come knocking. In fact, its never happened. I feel like kidnapping some of her school "friends" just so that they will come and hang out).
Im also quite aware of the looks and stares because of all these things. I just don't think people realise that we don't actually get any help with dealing with this. Ellie is what she is. Ain't nobody going to send us telegrams or flower of sympathy because its actually a lifestyle we have to deal with.talking about a wild 10 minutes explosion where you feel that no matter how much convincing you apply to people, they think what they like anyway? So you go about your business
loking like a total fool for
nobody's and yet
everybodies sake.
And you know what, it pisses me off sometimes? Nobody actually sits you down and talks about these things with us. Our feelings, our thoughts and our emotions. I think people think we are
ok with it and yes, of course we are, but sometimes, like today.....I just erupt. I want to purposely bound about like banshee and shake people and say "Hello, do you know what its like to have a child that doesn't fit in?".
Im trying to describe that gut wrenching anger similar to how you might feel when you watch a
tv programme about teenage girls mocking girls who are more inferior to them, or bullying in playgrounds or sadistic smugness from business associates cashing in on a one time achievement. You know that feeling? Its not jealousy, its more like fighting for the one who deserves better. They are wrong and you are right..... you know it, don't you?
But there are sides to Ellie that some people need to be aware of. For instance, Belle never, ever volunteers information. You have to prize it out of her BIG style. Everyday we have the same
convo after school...... how was your day, what did you have for lunch, did anything happen, anything exciting in lessons happen? And they are usually the same answer in mono-syllabic answers. And then we get home and she takes a rest and then watches TV or plays on her
DS or has a couple of minutes on her trampoline. Then she has her tea and then she has a bath and then she settles for the night with a DVD and then she goes to bed. And in between I want to get her involved with prepping the tea or playing on the
wii. I offer to let her rummage through my buttons (something she loves to do) or take a wild flip through my crafts supplies. But no, she is content in being just her, doing her own thing and in this bubble that I want to be a part of.
And sometimes I don't want her be like that.
I want her to say "
Im just going round to my friends house, Ill be back home for tea". I'd jump through burning hoops to see that day.
Or maybe she might go on
MSN and chat with her friends - if only she could type quick enough or spell
lreadable, normal words (and not phonetically as she does now). Sometimes I want her to come up to me and say "Mum, Ive been pretending to be dependant on your for so long to test your patience. I've been doing this to add to the other sacks of shit you deal with so that I would test your endurance. I purposely haven't matured so that you could go insane and stand out from the crowd just as much as I have".
Ok, I don't really want her to say that but one day I might wake up from all of this and thank the lord it was a horrible dream.
But it isn't.
Its not horrible.
But thinking about it for prolonged moments of time makes it feel horrible.
Am I making sense so far..... have I totally fruit looped out yet? Honest,
Im not insane!!
To make my wild explosion worse is that we went to genetics on Friday at
Alderhey. I had no idea what they wanted - I thought that something may have magically developed. Like an angel had called upon the team to deliver the secrecy as to
Ellies condition and that my favourite doctor would deliver it to me so that I would love the news even more. But they really are no further forward except to try some new DNA and
messified chromosome testing against their normal DNA and
messified chromosomes to try and determine if Ellie has this microscopic missing piece. That's cool ,that's fine I thought but the Hospital is a children's hospital. And they want Mark and my blood to rule out some stuff. But they wont take our blood because we are adults. So we have to go to our local blood unit to take some samples. But our local unit only sends bloods to Manchester and not Liverpool so they won't do it. So because of some ridiculous bureaucracy we can't give the blood. So
Ellies tests get delayed further and for gods sake....
Im going to stick my head in the oven.
She has also been appointed a new
neorologist this year. He's pretty good but he was a bit of a twat last time we saw him. He scorned us for going to America. He took it personal that we didn't think that his hospital was good enough. And god, it wasn't like that at all but he
wouldn't let me explain. And you know that feeling when no matter what you say it seems to come out in french instead of
english and that you fall down a well and you are looking up at this face almost beet red
because wee deigned to go to another country for medical advice that could prove (and did) to be better than any
Uk doctors in the past. And
Im sat there cramming as much out of him
because the next time we are allowed to see him is in 9
friggin months. By which time the Endocrinologist, Genetics,
dieticians,
opthalmologist and
gastroenteroligist will have lapped again - each with snippets of info but unwilling to talk to each other in one room at one time therefore delaying the cause so much further into her 40's let her alone her 20's.
I.
am.
going.
to.
scream.
Its surging up my throat now and my heart is palpitating.
**wanders off for a minute**
Ok, its going
away now.
I honestly sit here and wonder how the frigging hell I wake up in the morning and not wonder which form of suicide would be quicker. I get up off my pillow and sit over the edge of the bed and stare at my (quite unruly) reflection and wonder if the lines on my face have been created from constant frowning and upset. I search within myself to even bother turning up to the millionth hospital appointment and wonder if the Doctors are all laughing at me as I fight for some help with them knowing
Im the
Alderhey joke and that Ellie doesn't even exist; she is a figment of my imagination. Then I start to think about the splints Ellie got given a few weeks back and how she just CANNOT walk in them. And why they thought she ever could and why they didn't offer us physio to break her into them. And how embarrassing it was trying to get her shoes to fit them (and in the most disgusting fashion so that she stands out even further from the crowd when she eventually does get to wear them). And how much she cries when she tries them on let alone walk in them. And now
Im starting to get really pissed as i think of the wheelchair they are about to offer her to take her out of her pushchair. I don't want her to have a wheelchair, I want her to be able to walk - so if they pulled their bloody fingers out and get to the bottom of all this, she will be normal. Like the teenager she deserves to be with lots of friends who want to be with her and not feel sorry for her or even worse - pity her.
**20 minutes time has elapsed. Ive calmed down. Ive had an imaginary cigarette. Its all cool here**
So the dark side of me reared its ugly head again.
Sorry.
Its averaging every two months right now which is better timed apart when you consider
PMT is every 4 weeks. And even that is bargained with 70% cocoa chocolate. Oh yeah!
So lets just get past the things she can't do because these are not things that concern those kids that walk past me everyday whilst I sit in the car still hoping and praying that one day we will get to the bottom of all this medical clap trap. I think its about time I tell you about some of the most gorgeous things that has happened recently that lifts me out of my personal doldrums and allow myself to celebrate in her personal victories.
On the rare occasion that I ask how school went she sometimes tells me about something that leaves me thirsty for more of her days reckoning up. She quite casually told me "I got a level 4 in Science today".
Screech - car comes to a halt.
I cant bloody breathe.
I purposely pull over so I can turn round and see that
sunshiney face.
Ellie is only ever a level 2 or 3. Her peers are more on level 5 or 6. One is even a 7 (that's brainy!)
But 4?
Holy Shit.
Science is
Ellies best subject. And even though she is pretty behind in Maths and English, those two subject shape science as a whole so she is not completely remedial. Next to Science, Belle adores Geography. She once told me after school that she is learning about
preticipation. 5 syllables and correctly announced.
Wowser. That's goes with her other key word of "unfortunately".
She also is quoting the digestive system to me and in light of some
carb cutting at my end she started quoting other food composites to me (like she was reading them from a book in her curly head). And I look at her full of wonder
with the most innocent face and ruby red lips that
every time they move to talk I just want to squish and kiss her..... almost like sucking the l
ife out of her because i just want to consume her sweetness.
And, oh goodness, now I wonder if
thats how the mother of a teen-to-be should talk about her daughter? Is it wrong that we are so protective of her or are we delaying her development by making sure her life is comfortable? Is it me
that's stifling her growth, her aspirations and confidence? Oh god, where is the bloody parents manual when you need one?
Normally I'd give a damn about some of you silently mocking this child's {or hell, even my} abilities as you know your child can do better. And
Im pleased for you. Of course I am. But because Ellie has to work 10 times harder than your average, it makes my pride shine shinier than most and that's what allows me to squish my previous anger in this post and save it for another day when
Im having pretty much a very shitty day again.
Im not sure if this post is fluid or even makes sense but by god! It feels to get all that out of my system. Must celebrate with lavishing myself in the surroundings of my Basic Grey Collection.
Go me.
Down in one..............
aged 31 or 13?
Eyes open one minute
Closed the next. And Im still convinced Im a cyclops...why do I have one big eye and one little eye when I smile??!!!
Yest afternoon, before Frankie and Benny's adventure I popped over to Oswaldtwistle to teach a class in punchcraft. Having limited punches to use I managed to make 3 layouts using squares and circles alone and in the end, myself as well as the ladie,s fell back in love with the simplest of shapes. Liker the old saying goes, its not what you make its how you make it. It was a lovely afternoon and the company was especially friendly.
Disapproving the fact I dare take a picture of her withouy permish.
Giving me the 13 year old look of disdain.
Ok, Ill warm to the camera, its less bitter than the biting frost.
Now Im going to get a bit cocky
This kid makes me laugh. I live for moments like this - me, her, good light, sweet ruby lips, questions about random what-nots and a cosy car whilst we watch other people freeze to death.
Then I made a card with one
then a little frame for marks desk in his boys room
then I did some tags with glimmermist - which I loved playing with by the way!
Ans here is a pic of MB holding my handmade pumpkin which I was inspired to attempt after seeing 
