Ladies Camera Club

16 Nov 2008

She's almost a (teeny) teen

**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 life 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.

70 comments:

Kay said...

Oh, Kirsty. {{{{{}}}}}}
My heart goes out to you. I wish there was something I could do to make things better for you and Belle. Sadly, all I can do is let you know I'm sending good thoughts your way - and I am, boatloads of them.

Kate said...

I just want to cry along with you. I've read your posts when I come to your blog and I can never understand why you are offered up such a hard time when all you want to do is take care of your little sweetie.
I'd fix it all for you if I could.

{{hugs}}}are sent to you both.

Heidi said...

Kirsty,

Your little Belle may never do the things you listed, but she is loved and cared for and absolutely adored by her parents, family, loved ones, friends, and also she's admired by thousands of others who read your blog and have gotten to know her through your wonderful words and pictures.

She is a beautiful, special little girl and she has a very, very strong mum!

It's ok to scream about it every now and then...it's not fair...

I wish there was something, anything we could do to help...I wish I had a magic wand to wipe it all away, even for a day and give you some sort of normalcy...or what is considered "normal".

I can't do that, but I can send huggs and good thoughts, vibes, and prayers from America to surround you and your little girl!

Anonymous said...

I love you and I get you, it sucks doesn't it, I want to scream too.

corinnexxx

Jo said...

well my friend, what can I say? I think you've said it wonderfully just how you feel and as you know, I stalk your blog all the time!

I know that you do your best for Belle, and no, I don't think how you are with her is holding her back. She has the most wonderful, supportive parents that anyone could ever ever wish for.

I know shit things happen, and I often waffle on about things people don't understand, but I hope you understand me when I say Belle couldn't have arrived with better parents! You are the most supportive and wonderful people, I think anyone else would've probably have given up the fight by now and resigned themselves to "that's just the way it is!"

Great that you still have the fight in you. I know it's hard sometimes, nobody could doubt that, but if you give up then who would fight for her?! Keep your chin up. We're all here for you, and have ears - well, eyes - to try and support you along your way.

I hope this makes sense.. probs not, but hey ho.. you know what I'm trying to say!

Love to all.
jo x

Jozza said...

I like to think that nobody who follows your life on here would silently mock Belle. Reading about all you go through in your quest to get to the bottom of why Belle has the problems she has just confirms my general belief that "life. is. SHIT"

The thing is though that Belle couldn't possibly have better parents. She is loved and cared for and I really feel you pain hun. You've had a rough deal - parents all over the world have healthy children and abuse them beyond belief (RIP baby P) whereas you have been chosen to have a child with issues. All I can say is that I am in awe of you and how you cope. I can't imagine what you must go through day in day out. All we want is to protect our children adn we want the best for our children and seeing them in pain and struggling feels like having your heart ripped out.

You keep going on that treadmill and I hope that you get your answers.

Hugest hugs
Jozza

PS. If you ever find that parenting manual can I have a copy because I could really use one too!

Vicki said...

Big hugs Kirsty.
Belle is a very lucky almost-teenager in many ways - she has the most adoring mum, so many don't in this world. The things we have are measured in so many different ways, but above all is the way in which we love and are loved. In this respect, Belle is the luckiest little girl in the world. It doesn't make your pain any less, but please hold on to that.

Mooneybeams said...

I think you are incredibly strong and brave to only have these moments once every two months. Of course as a mother you want to see your child living the best life possible, and it must be incredibly hard watching her be different.
I don't know what to say other than that I am sending your family all the best thoughts in the world. I hope that the doctors manage to find something to make your lives easier.

Debbie said...

Big hugs to you Mark and especially Belle. I can't offer advice but can send you my loveand big hugs. Belle has a super loving family.
Big hugs Debbie xx

Anonymous said...

I understood every word and every feeling. Hugs to you, more hugs to you and even more hugs to you. The shining light in all of this (apart from Ellie, who seems to shine immeasurably) is you and Mark - you may feel like shit and want a parent manual - don't we all!- but you have no idea how smart and strong you really are! Me thinks you should show the doctors you blog post - you have probably expalined yors and ellies life far better in one post then they have ever understood. And any time you feel like a rant, your blog readers are always here to read!
You go girl!
KarenRel xxx
Blog Stalker

Sam Fenton said...

I don't know you but I read your blog every day and what is evident to me is that you are an amazing mother and that you have an incredible daughter. Keep fighting.

Rosie (Freycob) said...

Kirsty, my hugging arms are round you, Mark and the gorgeous Belle!

She couldn't ask for more loving, caring parents than the two that she has. Life sucks some days, other days it shines.

May it shine more days than it sucks!

Here for you honey!

xx

makeyesup said...

I sure wish that I had some words of wisdom to help. Can't imagine what you must go through on a daily basis. I do love reading about Belle and seeing her pretty pictures. She looks like she enjoys life as she knows its. And glad that you can at least write about the frustration you face every day with trying to get the help she needs. She is one of God's beautiful childdren.

Hannah said...

I just cried so much reading that! I have nothing but solid gold admiration for you guys and I think you are fab!
Belle's achievements in science are brilliant (it was my favvo subject too!) reading your blog makes me want to run wildly hundreds of miles to your house and hug you all (armed with the obligatory mountains of chocolate and basic grey of course!)

Keep on fighting girl, there are thousands who would have given up by now, your stamina and fight for your cause is well supported here and we are not behind you in this.............. but we are standing right beside you.

Lotsa love
Hannah x

Sam said...

drat.............I can't think of anything good to say really, apart from "will someone professional get their sorry arses in gear and togther and help find you all a solution to this dreary "no-answer" situation??? arggghhh!!!"

Sending you love and feeling your pain\anger\frustration xx

God's Rock Angel said...

I couldn't read all in one hit because I'm at work so I'm going to copy and paste to an email or soemthing and read in bits as and when I can! I will be back with a proper comment later today :)

Lynn said...

Oh Kirsty. You made me cry. And you made me laugh. I wish I could my express my frustrations as eloquently as you. I really admire you and if I'm ever lucky enough to meet you, we should go for a hot chocolate and a chocolate chip cookie and vent about neurologists and wheelchairs!

Nick said...

It makes my fight to find out what condition I had seem so insignificant compared to Belle's.
She may have all these problems but she has something I'm sure alot of those other kids you've seen walk past the car don't- parents like you and Mark who would and have moved heaven and earth to do your best for her.
Keep you chin up hun xxxx

Clare said...

Simply saying thinking of you, Belle and Mark. I know you can all get through this - you're a fighter, so give them (the Dr's) a punch from Me!

I'll call you soon,

Clare x

Deanne said...

Kirsty, i really dont think you realise how wonderful you are.
You have a beautiful family and yes Belles development is not on par with her years but she is probably loved more than so many other kids of her age.

You give Belle so much love and dedication and forget about yourself (as I'm sure Mark does too) You deserve to have a rant and to share it so people like us stalkers (lol) can share it with you, that just makes you human :)

A huge hug to you all and hell I dream of different things for my boys all the time, to better them because Jack is so emotional! and I get so frustrated, and Riley is such a screamer, I end up screaming myself because I'm so sure he doesnt love me, hell even like me!

Shit days are good days, we realise what we have, why we have it and then we grab a chocolate bar and recover from it :)

Loves ya xxx

Jan Connair said...

I just don't even know what to say. I've nothing really helpful to offer, except to let you know that it's okay if you want to get it off your chest now and again. Don't blame you a bit, as I would be absolutely bonkers in your situation. I really pray that you get an answer to this medical mystery soon!

Marie said...

{{{HUGS}}} Kirsty.
I've mentioned to you in the past that my brother has Downs as well as a whole host of other complex issues.

I so clearly remember my Mum having days like this. Days when she thought she was just banging her head against a brick wall. When she pondered whether it really was her being neurotic (as she was sure the doctors thought) and not actually some real issue. Days when she spoke to 5 doctors about separate parts of my brother when none of them actually ever saw him as a whole person. Just a brain and some genes and a heart and a digestive system and a pair of feet!

I remember times when we'd be out and about and my Mum would be doing something for my brother (just the simplest thing, like cutting his food or holding his drink) and people would be looking at us with that "Why aren't you letting him do that himself?" look. I know you know that look! And I just wanted to SCREAM "because he can't do it himself!!!!".

It's a fight. Every day is a fight. I remember hearing someone once say that being a parent of a child with a disability turns you into a guerilla warrior - it's alway stuck with me, because I've met a lot of parents in that situation (from my family life and in my previous job) and I know that its true. They fight every day to get their child noticed by a system that will ignore what they can't recognise or easily fit into one of their "categories". An easier life for the doctors, but an ongoing and endlessly frustrating battle for the parents and the child.

So, what do you do? You do the only thing that you can do. You get up in the morning when all you want to do is suffocate yourself with the duvet cover. You plod on to the endless round of doctors and blood draws and nurses and physio every time thinking "This is going to be the one where we get the answers". You trust that ultimately, its YOU who knows whats best for YOUR child. And you wish every day for that manual! (If it's any concilation, I don't have the battle you have and I still wish my 2 had come with instructions!). You wait. For those moments. The ones that make the rest seem, whilst by no means okay, just that little bit easier to deal with. And when they come, well, you ride that wave for a little while and revel in what it feels like to have everything be okay, just for a time.

There you go. Froot-looped response to your-not-so froot-loped post. I don't know if I should be worried that I followed every word or not!? LOL.

More {{{HUGS}}} because from a distance, I feel your frustration.

xMx

Marie said...

Blimey. That was bloomin' War and Peace! Sorry ;)

xMx

weewiccababe said...

Kirsty, firstly I just wanted to say, don't apologise. It's perfectly reasonable to feel the way you do.
Although my kids don't have the same issues as Belle, 2 of them have additional needs - one physical and one mental. You're obviously a fighter and I believe you will fight every step of the way for Belle and for yourself too. I know you probably won't find anyone who knows exactly what you are all going through but you'd be made very welcome on ESP (link on my blog) And maybe the other parents there can give you some support and/or advice.
Take care
Debz
xxx

Linda said...

I love your blog, but haven't commented until now. I, too, have a daughter who "doesn't fit" and who has special needs. So, so much of what you wrote rings true for me, for us.
Your love for your dear, sweet Belle is formidable. You're lucky to have one another.

Paula - Buenos Aires said...

{warmest, squishiest hug}

Miss Magic said...

Kirsty,
I know how it sucks!
I know we chatted at lux angels about how it sucks!
I know that knowing others who have kids who "don't fit" doesn't make it any better or easier to handle.
What sucks even more is the harsh reality is we're all just getting on and making the best of it. You don't need me to tell you that for all the "things" that Belle can't do there's loads of things that she can do which melt your heart and stop you in your tracks, because you know that. What I am saying is that it is perfectly normal and healthy to "vent your spleen" and feel angry with the injustice of it all and I'm glad that you have a place to do that. I'm also glad that you have some very supportive "cyber"freinds (judging by the posts) of which I am one who are sending loads of love and hugs your way.
And BTW "Go Belle" level 4 in science is a very cool thing indeedy!!
I know I don't comment often but Google blogger doesn't recognise me and I have to register each time (which is a friggin pain!) but on days like this my god is it worth the effort cos I know where you're coming from girlie and it isn't a nice place.
So, chin up and on with the battle!
Keep smiling hun.
Hugs
Sharon x

Anonymous said...

Dear Kirsty

I know you don't know me from Adam but I visit on a daily basis...

Sitting here cyring my eyes out. It's actually a very brave thing to tell all your inner most feelings like that. I have a son who doesn't match with other children - I'm always gritting my teeth when I hear about other women's perfect children. What comes out of my mouth and what is going on in my head are two very different things!! Sometimes I long for a proud Mummy Moment - but they are different to other people's.

Take comfort from the fact that there are a lot of people who care very much for you and your family, especially little Belle. We can't fix it for you but hopefully you can lean on that support.

I wish you all the very best.
Anon xx

Angela W said...

I know it had to help you get all of that out, and alot of us are here for you and will listen. Even if we can not do anything for you but to let you know that. I know this has to be hard for you, your husband, and Belle. God gave you the blessing of having Belle, so he must know you were the right fit for each other. Love and prayers go to you and your family.

Amelie said...

theres nothing i can say,my words are clumsy and inadequate compared to whats already been said here.
but you're an inspiration to me, because if this was me and maica i don't know how the hell i'd cope with it.
i wish i could make it all better.
big fat hugs.
xxx

Bekka said...

Kirsty

I am not a Mum and cant start to really understand how you feel - I can only start to imagine the frustration and the other doubts that go round in your head

BUT

What I do know:

Belle may be different but she is amazing, loving, thoughtful and has the confidence to be herself

You do an amazing job of being a Mum - she is lucky. I wish my Mum loved me for myself just a tiny bit as much as you do her

You are an inspiration, a totally wonderful person

All the rest has been said by others - so I am sending you a hug and as much virtual chocolate as you can eat (its the good stuff which never makes it to the hips!)

With love and total admiration

Bekka
x

Davinie said...

Sweet Kirsty
Hugs to you mama.
Celebrate sweet Belle for the individual she is, and don't worry about what other people do or look like. Your baby is her own person and you should do the most you can to help her lift herself up to the best she can be. She isn't like everyone else, so while it's difficult because she is a rare soul, encourage her to the best of HER abilities. If it makes it easier for her to walk in ugly shoes, find a way to make those ugly shoes feel like a fashion statement that everyone else is going to want to have in their wardrobe. Isn't it most important that she walk?
If she like science, encourage science. Maybe that is something you could do together before tea.
No matter what, I know you are doing the best you can and are only looking out for your sweet baby, so don't let a doctor make you feel bad about looking elsewhere for answers. He doesn't seem to be giving you any!
Again, HUGE hugs. Maybe her first birthday party as a teen will be a beautiful thing. Have a party. Invite the neighbor kids. :)

Darcy said...

oh Kisty, I have tears running down my cheeks. Big squishie,drippy wet hugs.

You are an amazing Mum, with an amazing little girl. Nothing else matters.

lauren said...

Oh girlie! I cannot even imagine what you are going through... but it must be hard! And you need to vet from time to time! Hang in there and know that must of us think well (not ill) of you!!! HUGS!

Roz said...

Kirsty, I'm at a loss for words to say, I know how you feel about Ellie, and you know everyone who meets her has there heart touched by her, I'm sending you all my love and support.

Deborah said...

I am an avid reader of your daily delightfully funny and wonderfully poignant blog. If it is any consolation, I have three healthy fit boys and yet I still am not satisfied with that. I want them to be brighter, try harder at school,have more ambition, clean up after themselves,offer to make me a cup of tea every now and then and have a conversation rather than the nonchalant grunt they deliver. I love them to bits but sometimes get bogged down with the here and now and the negatives rather than celebrating the wider picture and celebrating the successes they enjoy. We can all learn from your courage and determination to take on the big battles and fight for some normalcy((is that a word?)for Belle. Your energy is boundless and I take my hat off to you and yours.

Kate said...

It sounds like you really have some decisions to make as your daughter reaches this milestone in her life. I know lovely Ellie is very special but don't forget these decisions about encouraging their independence are ones we all have to make for our kids. The DD and her friends went away to Brownie camp at half-term and one mum said to me that it had been so difficult to prepare her daughter as she had to teach her to brush her own hair and organise her own clothes. If this trip hadn't come along how long would she have carried on doing her kids hair every day?

You are a great mum and you are thinking of Ellie's future which is the right thing to do. I know you have said before that you are worried that she will always be dependent on you.

Could you put your toe in the water and encourage her with a bit of independence? Park the car a little further from school to pick up, find a brush with a comfy grip and get her to give it a try etc. She may rise to the challenge and astound you or you may have to try again when she is a little older, but if you don't get her to try?

amber jane said...

All I want to do is wrap my arms around you and give you the sqeeziest hug ever, you are not crazy or loopy you are a Mum on the edge who wants answers and I don't think anyone should judge if they haven't walked in your shoes- goodness I am not explaining this well but you know I love you and am here if you need to vent hun xxx

Anonymous said...

I visit your blog every day-usually to check out your gorgeousness that is your work, usually burning the tea as I read and absorb your life into mine...cant you cc that blog to the hospital?
Chin up, Northern Chick-you have a daughter to die for xx

purple_nikki said...

Just wanted to send you a huge hug cause I thought you needed it!

Nikki x

Sally said...

Kirsty, It's good to blow out. To rant and rave. You need the outlet, so you can then dust yourself down and carry on fighting. Trust me, in various ways, there are lots of us out there fighting. We will carry on fighting. We are Mothers and Fathers. We will fight post code lotteries for medications, we will do whatever we have to do for the best interests of our babies, whatever their age. Do whatever you feel is your gut instinct. Don't let some newly qualified consultant make you feel bad about your decision. Cos your decision will always be the right decision. You are deciding and fighting for your daughter's future. You are not alone. Remember that.

cannycrafter said...

Sometimes, we parents have to vent our frustrations somewhere and it is only natural to do so! Somehow we feel we have to push so much harder to get recognition for our children's needs and it just plain wears you out!! You have love, you have empathy and boy does that hurt as a mum!!! You are a talented, funny, humurous woman who is just trying to do everything she can for their child, to help the passage from childhood to adulthood a little easier! Believe me, I fastened buttons, put on socks and cut up food for years on end and still think my son is not as streetwise as his peers, but little by little you will get there DESPITE the health service! Just remember, there is no manual, we all just do our best!! You are a wonderful mum and a wonderful person {{{{{{{{{HUGS}}}}}}}}}}
Speak soon, Caroline x

HL0517 said...

{{{{{hugs}}}}} to you and your sweet girl. At least you know that she is loved by you and feels safe and secure to be who she is. It really stinks when beuracracy gets in the way and Drs that we trust to try and help us don't want to go the extra mile. I hope she has an extra special birthday as she becomes a teenager.

Chris said...

Kirsty,
I just love your blog and through it feel I have got to know you and your small family. You have a beautiful daughter who in many ways is as strong as her mother. She like you is an inspiration to us all. Take care.We love you and your family
Chris Coxon

Tracie H said...

Hiya Kirtsy.

I dont need to tell you that Belle is a wonderfully unique character. She will survive all that life throws her way....how do I know this? ...because she has two very loving parents right behind her who are always ready and waiting to support her.
She may have to travel the long way around to get to where she wants to be - but she will get there in her own special way.

Whooo hoo on her grades - thats amazing and surely deserves a trip out to the ice cream parlour eh?

Keep your chin up hun and dont forget that its OK to feel angry with the cards life has dealt you -remember the sun always shines - just sometimes the clouds get in the way.
T.x.x

Gilly said...

Kirsty, I read this thinking to myself that you ought to print this post out, stick it an an envelope and send a copy to every doctor that you have to deal with who is part of the system which makes life so difficult for you all.

They might all be doing a really good job for lots of people but if they can read something like this, that has come from the heart of someone the system isn't helping, they just might begin to realise that people like you, who are screaming from the bottom of the ivory towers those doctors live in, have much to teach them.

Good luck in your search for an answer for Belle.

Anonymous said...

Hi Kirsty

I wish I had your eloquence and then maybe I wouldn't feel like such a screwed up loser of a mum so much of the time!!

Like you I have my feelings about so-called specialists who have no usedul answers, or perhaps they're just not answers I want to hear.

I too long for a "normal" proud Mum moment and berate myself immediately for forgetting to be proud of giving birth to the most gorgeous boy ever to walk this earth.

In giving out in this way it's a reminder, yet again, that we're not alone. And you just about made me cry and I'm no crier.

Thank you Kirsty.

Denise said...

Hugs are being sent to you from Minnesota. You and Belle are in my thoughts. :o)

vtpuggirl said...

Just wanted to add my hugs and prayers for you both, keep trying to figure out what is wrong. Don't give up, no matter what the doctors say.

Brook said...

I want to give you a big ole hug. Being a mom of a teen is so hard on it's own. Having to worry about a baby with special needs is heart wrenching. My big boy is in college and my middle is 14. Sam is 9 now. I worry for him so. He tells me he just wants to be normal. But, hard to be normal when you are only 45 pounds wet. All I can say is that she is lucky she has you! Prayers all around Chickie! Hmmm...I think I will go have a margarita for you.

Anne aka Anniescraps said...

Dear, sweet lady...
((((((hugs)))) to you , your husband and to the sweet Belle herself. I so want a magic wand to make everything right for all of you and for my own Matty too (not the same exact issues, but certainly the not knowing). I have no great wisedom on how to deal with doctors who refuse to talk to each other, if only I did I surely would share. They bloody well should take your blood samples, I wonder if you could go to the news paper or a an advocate that could shame them into what is logical? All I know is she deserves better as do you.
In fact you are a great mother, and Belle is a great daughter. Sweetie, it is tough and yes, I know you also love her till eternity and back. It is a needed thing this venting. Truly it is.
I know you know what a joy she is as well as I know you are fiercly proud of each of her accomplishments. I also know you will celebrate her birthday in grand fashion. Every once in a while it helps me when parents of Matty's school mates come up to me because they relay to me how their son or daughter loves Matty and looks at him with admiration for his friendly nature, and yes, some of his insights. One lady expressed how she uses Matty as an example of how to behave. Floored me, but it also made me realize they don't have set expectations of Matty. They are enjoying who Matty is as a person. Just as your daughter awes you at times, I bet there are some friends she awes too. So reach out with her, invite some nice friends over. Don't compare, just enjoy that they are enjoying each other. I am betting you'll be surprised. I hope stepped out of bounds. Take care.

anniescraps aka Anne from Studio Calico

Anne aka Anniescraps said...

Opps I was trying to say I hope I haven't stepped out of bounds. I really shouldn't type when tired, it is like drunk driving I am sure.

Love to Doodle! said...

Found this very moving Kirsty....I've seen your work and watched you on QVC and had no idea what was going on inside...

You have remarkable strength...I admire you so much...your passion for life, your work, your family and of course your love for your wonderful Belle...

Sometimes I wonder too...'very'
different reasons...different issues...but we keep smiling cos that's what you do isn't it....and another day arrives...and we get up...and do it all again...because we must...and then at the end of it, we're glad we did...

It's good that you share how you feel....for you and us...we can listen, ponder, relate...and offer support and our thoughts...

I do hope they find some answers for you...in the meantime, Belle will get stronger each day and surprise you with lots of little things on her journey to becoming a young lady....a long way off, and so much can happen on that journey...how exciting that could be...

Take care of yourself....you're doing fab....and time will change lots of things.....we just don't know what or when....xx

Kristii said...

Oh you sweet wonderful woman!! Sending you big hugs!!! My heart totally goes out to you!! I wish there was something I could do! Know this: Belle is so lucky to have you as a momma, and you are so lucky to have her! Enjoy her first birthday as a teen!! Each moment is precious!!

Anonymous said...

Kirsty

I'm blessed to be the Mum of three teenage girls, mine have normal teenage issues and still I worry for them, about them, have I been the Mum they deserve etc. I read your blog regularly as the craft stuff is a great inspiration and one thing that always shines out is what a fantastic Mum you are.
With all that Belle has to face she couldn't ask for better parents!

I wish the system was not so against special children, I wish there was funding and understanding and answers. But unfairness carrys on.

In the meantime I'll continue to keep you and Belle in my prayers.

Tina xxxx

Anne J said...

Kirsty, it must be so difficult for you and Mark, and you are doing a wonderful job.

The system is rubbish, I wish I could wave a magic wand and make it better for you.

I really admire you. Carry on being strong and proud of your Belle, she is wonderful and very very loved.

Anne x

manicstamper said...

Kirsty
Reading your post just about ripped my heart out.
I'm no wise woman and I have no answers but just want you to know that you and your family are awesome.
Sending huge hugs to you all.
Sheila-x-x-x-x-x-

Anonymous said...

Hey Kirsty,
I just wanted you to know that you are often in my thoughts. Having met you (albeit just for an hour or so) I know what a very special and talented lady you are. You made quite an impression on me. I can't help with any of the issues you have but I can tell you that I think you are a fabulous Mum and Belle is sooo lucky to have you. I wish I could vent as eloquently as you! I'm not sure I would have your strength and good humour but I know I would share your frustration.

{{massive hugs}}

Jo

Terrie B x said...

Hi Kirsty!!!
Sending you all big (((hugs)))..whatever way you get there ...You will get there with loads of love ....cos you all loads of love and devotion...You are `fabulous`....
Wish I could do something to help you all...
`Well Done ` to Belle on her Grades..Yaah!!!!way to go...:)~X~

michele said...

you have a beautiful, loving, fabulous daughter kirsty. When you write about her the words shout your love and devotion to her. You are an incredible women and mother, you would not be if you didn't doubt yourself from time to time. It is these doubts that keep you focused on the true goal, your daughter.It is better to voice your anger and doubt in a non-distructive way, you have strentgh to do do this, the weak hurt others.
I wish i could do more than offer a listening ear and a huge hug for you all. you are doing a fab job with belle,{{{{{{hugs}}}}} mx

BondGirl said...

I read this once about raising a child with disabilities and its stayed in my heart since ....


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

PodBod. said...

I have read your blog often and check in daily as a committed blog stalker... I have never before been tempted to sign up and leave a comment despite being a big fan, perhaps I am destined to be a reader rather than a writer :)
However after reading this post I wanted to share with you and my fellow followers a piece of writing I often used in my previous job. Please forgive me if you have read it before.

This was written by a Mum, Emily Perl Kingsley who is in a similar position to yourself... Upon writing this I immediate correct myself that no two situations are the same or even vaguely similar!

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

I hope this helps others to understand.

PodBod. X.

Karen said...

Belle is so lucky to have such a loving supportive family, and you are so lucky to have gorgeous little Belle. A parent must always draw on that inner strength and fighting spirit that God gave us to survive when times are tough. Sometimes it will seem as though the barrel is empty, but somehow, thankfully, you find it topped up again.

Big hugs xxx

Sharon Speakman said...

With love to you all and thinking of you, take care sweetie. Must get you out of your house and around to mine for a brew soon!!!! Maybe you're free next week sometime. Give me a ring or email me. Sharon x x x

Just call me G said...

Kirsty,

I read your blog entry out to my 12 year old niece Chloe earlier on.... she was on msn... showing me her hair that she tried so hard to curl.. ( shes got poker straight hair) then she had a look on your blog at some of Bella's photos.. She quite simply said... " Wow, what beautiful hair, I'm soooo envious" then when we were talking... well she was talking and I was typing.. She said... it might be an idea if Bella gets a web cam and chooses a friend or two from school who have them or if she gets them a webcam for Christmas ( she said ebay do them really cheap) so that she can chat over line instead of typing. Chloe has a friend who is terminally ill and the class chat to him this way so he doesn't have to get tired by typing.

Chloe said its a pity we live hundreds of miles away because she would love to do stuff with Bella.

With regards to the blood tests... can the childrens hosp write up the forms, your gp surgery take the test, results back to the surgery and you get a copy from them???

I cant follow with anything further then what has already been commented.... when you feel low Kirsty... have another read of the comments... it wont change things but might help you to believe when you start lacking in belief of yourself.

Gentle hugs xxx

lisa said...

kirsty can i just say wow this is the first time ive read your blog and I wanted to cry shout scream and just go wow wow for i share your thoughts on your precious daughter as im mum to 3 autistic children and yes i agree every day is a struggle and would love to change others attitudes but way i see they miss out on smart loving loyal and fun people at times yes id gladly swap mine for aliens as seems easier but boy do i love em they make me the mum i am and you my dear lady sound like the most fabulous fun mum in the world so just wanted to throw hugs your familys way and say way to go keep doing what your doing and remember we know our kids better than anyone took the docs etc 11 yrs before they figured we had probs i knew at 6 wks old but as you say no one listens well now im waffling just want to say you and your family rock hugs glitterbug ( lisa ) xxxxx

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