Sighh

after i came off the laptop yesterday i ate a yogurt lol go me and then after that i was a bit sorta bleurghh and like whateverrs. and then i had a psych chat and i just kinda let rip and went completely insane.. had quite a horrible meltdown and the lights were flashing and these 3 men were standing at the end of my bed saying nasty things and telling me to go to hell (hallucinations, they werent actually there) and then my skin was crawling and stinging. and the voices were louder and i could hear my baby crying and god i was such a wreck. so that was til like early this morning and then the nurse eventually just rammed some valium in my mouth even though i was kicking her away and all that crap. so yeah sorta spaceyy now. and completely and utterly shattered.
and then this afternoon i had a shower lol that shudnt really be news but it was quite eventful. i have to be watched in the shower lol idk why. its a bit stupid. so yeh i was watched in the show and i nearly had a panic attack cos i had no baby shampoo left and i actually cried. and then after that i went to see the baby and i got to hold her and change her nappy. how sad is this right thats the first ever nappy of hers iv ever changed. and then i got to try and feed her with the bottle but she kept gagging so gave up.

I'll Kiss It Away xx

Twenty days and Twenty nights I’m sitting right here by your side
Surrounded by the monitors listening to you sigh
You’re sleeping so peacefully, sometimes you’re smiling in your dreams
Lord, why had it to be her, why didn’t you pick me
Until the day you were born, still hoping they were wrong
But now I’m here to make you strong,
I’m with you..I’ll carry your pain, whenever you fall again
I will help you stand, just reach out your hand
When your world is dark, or you’re hurt in your heart

Come what may, I’ll kiss it away
Come what may, I’ll kiss it away

Sing softly into your ear, your hand is wrapped around my finger
Kiss your eyes, whisper “I am here and this won’t take much longer”
And now we’re having fries, you’re chasing butterflies
And show the world you want to fight, oh yes you do
I’m with you..I’ll carry your pain, whenever you fall again
I will help you stand, just reach out your hand
When your world is dark, or you’re hurt in your heart

Come what may, I’ll kiss it away

In the darkness of the night
I’ll be there to hold you tight
And until my final day, I will guide you, come what may
Come what may…I’ll carry your pain, whenever you fall again
I will help you stand, just reach out your hand
When your world is dark, or you’re hurt in your heart

Come what may, I’ll kiss it away
Come what may, I’ll kiss it away

What the hell?

so todays my days gone pretty craply. i had dialisis which was obv crap. and i had no one to talk to but this old man was going on about his family and stuff to me just chatting at me and then i just snapped and i was like can u shut up please so he stopped talking for like 10mins and then started talking about his allotment which was a lot easier to hear than his perfect flipping family. and i managed to eat a yogurt for dinner and thats it. im really hungry but my mouths just so dry and i just dont fancy eating kwim..

i spoke to paris at lunchtime cos i thought i should make it up to him cos yesterday night i spoke to him and made him cry cos i was so paranoid and begging him to stay on the fone. so today went a little better he just chatted away. he told me about his thomas the tank advent calendar which he is chuffed to bits about and hes got a new toothbrush. and hes promised next time he sees me hes gona bring his toothbrush to show me. i even managed to make him laugh. and hes got a new coat and hes dead exited about xmas. i was a bit pissy with him :( but managed to keep the paranoia in and not have a complete panic attack when he hung up. whatever lilys doing shes doing it right.. so thanks lily :)

and then this aft after i came off dialisis my half brother aaron called, and gave me my mums brothers number which completely had me in a panic cos like i didnt even no she had a brother and what if hes a complete fucker and aarghh.. so i had to ring aaron back and he had to calm me down and he was like well i was telling him about you yesterday and he wants to get to know his neice and he doesnt want to be pushy and i shud just ring him and that hes really nice. hes got a family and everything. and aaron was just going on about if i speak to him iv got real chance of a family. what the hell am i supposed to do?! i never even knew my mum had a brother? and what the hell am i supposed to say to a man who i have never ever met and never even heard of until now. he had a chance to chance my life. if he knew about me he could of saved my childhood couldnt he. how do you forgive that?

god im so so paranoid now! what if aarons lying? what the hell is this anyway? aarghh

Slow Dance

SLOW DANCE

Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?

Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?

You better slow down.
Don't dance so fast.
Time is short.
The music won't last..

Do you run through each day On the fly?
When you ask
How are you?
Do you hear the reply?

When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?

You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last..

Ever told your child
We'll do it tomorrow?
And in your haste
Not see his sorrow?

Ever lost touch
Let a good friendship die
Cause you never had time
To call and say 'Hi'?

You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last..

When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day
It is like an unopened gift.
Thrown away.

Life is not a race.
Do take it slower.
Hear the music.
Before the song is over.

This poem was written by a terminally ill young girl in a New York Hospital.

my session

so yeah i had my psych session at like 4. i was like all psyched up like yeah go for it you can do it. but sorta in a panic aswell lol
but then i got in there and answered a few questions about how my days gone and all that, and the passed out. im such an idiot!
so now im clinging to the remains of my ok mood, and getting more and more paranoid by the minute. i cant hack it anymore. how can i tell that people are still there if there not?!
ffs...

today

so.. this weeks been a bit crap but lets just forget about it, ive cried buckets too and still am bawling my eyes out. im in an ok mood today though cos my dialisis has been moved to tomorrow so thats good.. but i wont be able to talk to annie so im be bored and all on my own and feeling like crap.

just had my weigh in and im 6st 5lb go me im getting fat.. i cant remember what i was last time which was like last week.. i might have been the same or a bit more. crap if ive lost more weight but oh well. cant have everything can i.

and.. drum roll please :) the best bit of news since like the beginning of this year.. blairs off the oxygen now completely and has just got a feeding tube cos she was struggling to do everything at once. shes had a measure up today 2, shes 4lb 9oz, 46cm long, 15cm round her waist (how littles that!) and 14 cm round her head .. shes doing so good.. she was on a vent on monday and was barely feeding at all and having seizures. shes had like 2 or 3 seizures in the last week so shes getting better, shes defo haveing less anyways. shes on some meds for them which i think are working

ive got a psych chat this aft and idk im not in the mood for having a meltdown. why cant i have a good day for once? all they do is ask about crap that i dont want to talk about. i could talk about beau for a lifetime but now i do want to talk about her and how lovely she was and how much i miss her, they want to know about my family! i might just like blurt it all out and then go bounce off walls for the night. whats one day of madness if it helps i suppose..
and its 4months today since beau died. seems like such a long time ago but its nothing at all. it still feels like yesterday. i miss her so much. i got her memory box out early this morning and just cried my eyes out.. ive got her tiny tubes and wristband and her necklace that goes with blairs. her wristband doesnt even fit around 2 of my fingers. by the end it was falling off her wrist thats how little she was.. and ive got all her photos and her blanket and her footprints and everthing. sighh.. it all smells of new baby. i was really upset the other day because i realised i cant remember her face. i can remember everything about her like how she felt and her little feet and her hands, but i cant picture her face. ive got pictures and things but i shouldnt need reminding should i? i know in time when i get over this il remember, and il be able to smile and tall blair all about her big sister. but its right now i want it.

last few days

so the last few days have been a bit mad. im just like crying ALL the time. like at the slightest thing! and i cant even work out why. its so so stupid. the babys doing alright, shes almost breathing on her own just on high flow oxygen to help her out a bit when she gets tired.
i went a bit blahhh yesterday and got put in seclusion most the afternoon. fun times hey?
and today was a dialisis day and i just feel so so sick. and now my brains going too fast for my mouth so ive given up so im like iaehigohisdghsuidhgsvuidofjsiodjv nothings moving fast enough for me lol
im just like going up and up and up and soon il just crash back to earth and thats not going to be pretty. i think i need some valium!

to sarah.. ive replied you your comment on the other post under this one :)

Blair

this is a picture by lucy of blair as a huge pink post it..
Lucy: thats good. i'm sticking a label on her saying " cuddles for lucy asap "
Kaylie: il stick it on her doll size nappy shall i
Lucy: yeah!
Lucy: on a large pink post-it
Lucy: actually you better make that a small one... i think a nurse or two might get a bit freaked if it looks like she's morphed into a post it note

and the thing on her cot says babber blair,, west country speak and the post it/blair says lucy cuddle

and so the baby today is a bit better. she can almost breathe on her own without the oxygen she just needs the oxygen, idk if i shud be happy or sad tho kwim just like im happy shes gettin better obv but like i dont want to hold her or anything. everything i touch i wreck...

Blairs MRI and ECG

the baby had an mri and ecg on friday and its showed she had a bleed on her brain which has probably been causing the seizures, and it could have been caused by the op or the op might have just triggered them or made her react or whatever. so thats pretty crap. and its got me convinved im going to lose her, beau had a bleed on her brain too and its what killed her mainly. so thats just made me be in a panic all weekend. beaus was a grade 4 ivh and blairs is grade 2. i was tempted to put *only* in there but beaus started off small and got worse. she had 2. i know blair is not beau. i know blair is stronger and healthier. but shes still only a baby. shes still only 4lb 7.5oz. compare her to any other 4month old you know. so in comparison shes not THAT strong and shes not THAT healthy. shes just had major surgery and her little bodys been through a lot. so its NOT only anything. im so scared for her. its one of the scariest things ever. i never thought id hear those words again but i am. she looked so little in that big mri machine. shes so tiny. i remember how little beau was so i know she could be smaller. but shes not. shes diffrent to beau. but still tiny. her ecg was ok though. shes still got the vsds obv but her hearts bearing up ok and the ops made a huge difference.

yesterday i had a really intense councilling session n they were trying out a different way like only asking yes no questions and that was ok but it really tired me out. and then today i had another one but they were asking loads and loads of crap about my sister and like god there lucky enough i mentioned her at all.. and i got really upset and was crying my eyes out. thats one wall i never ever want to look at, never mind break down. and this afternoon i had to see the eating disorder woman who made me eat pasta and i dont even like pasta so that stressed me out and i just couldnt be bothered to put up a fight anymore. and then i had to practice walking. i managed to get all the way down the stairs so go me.. im completely shattered now. ive just been having one big stress out..

im so tired of all this. i know i probably say this every time. but i am. i facy giving up right now.. and lol ive just realised ive been saying i know a lot. thats probably because theres someone in my head saying something against everythign i write. how stupid hey?

Dialisis day again!

what a crap day. i got all panicy and confused because i can rely on dialisis to be the day i see annie and have a chat and then the rest is crap but then today i had dialisis and i dont usually hav it today but then i got swapped so annie wasnt there so i got all confused.
and then i was all panicy aswell because i hate not being able to move, not that i would move much i just hate not being able to! freak out..
and than last night i had a weird episode and was weirdly happy and talking really fast and thinking all at once so all my words were in the wrong order. its so frustrating i could cry.
the babys got an ecg tomorrow and then shes gona have an mri to see if its a prob with her brain thats causing the seizures..
and ive been asked what a sezure looks like.. so for people who were wondering..
she jerks her arms out and then in, out and then in and breaths really weirdly, like forgets for 10secs and then breaths again. and she arches her back and flutters her eyelashes and her eyes roll back.
not a nice thing to see your baby do.

Today

well today was pretty CRAP.
to start with last night blair had another seizure and then flatlined. thank god she came back to me and through today shes been stable. shes still on the vent and weighs 4lb 6oz. she even held mummys finger and kicked her legs. i love her so much, but i want to get up and leave because i feel like none of this will come to any good. i cant get close to her because one day il lose her too. and i can feel it. nothings going to go right ever again.
and im still so paranoid. and im on the edge of a killer meltdown i can feel it coming. the voices are getting louder and i cant think right. everythings dazzling again and so intense. and everythings closing in. i dont know how i can be claustrofobic in a ward but whatever. im starting to panic even.
how stupid

A little paranoid today

urgh it was a dialisis day today and it makes me feel so crap. im so sick and dizzy and my bp drops. its the worst thing ever, at the end of the day im so tired, im shattered and in such a bad mood. i mite be sick and weak but i can still tell what i do and dont want to eat. which is nothing at all, im happy just how i am mate.

i shouldnt blame myself but i so do. i miss beau so so much its hard to put into words. when i first lost her, i was so so angry at everyone. now im just tired of being angry, im just angry at myself for letting things happen. maybe its a bit better when its directed in and then no one knows unless i say and then its only me who has to deal with what its actually like.

i feel like a retard, im mad enough as it is. feeling things and hearing things and seeing things, why not add paranoia to the mix?! yous hould try being me for one quarter of a second and youd see how crap it is, having all this shit inside your head that you know isnt real but the proof is there real that it is real but the only thing you have to hold on to is that its not real and that its just you and your head screwing you over..im so paranoid now its crap. when i speak to someone on the phone i can hear their voice and i know there there but then when they hang up they could be anywhere, i dont know there still alive or anything, they could just disapear when im not speaking to them!? how do i know there still there or even were at all. its hard to explain. its the same with texting and internet or whatever. how do i know people arent just there when they talk to me and gone when there not. and ive like got someone else in my head. and uh its hard to explain but sometimes it takes over and im not me anymore and i dont think what i think and i dont say what i say. its the other person. i think i am better in one sence like im not sobbing over beau 24/7 i can worry about other crap now too and pain for beau comes in waves. like in the morning theres a nanosecond where i want to reach and touch my lovely bump.. and then realise that was so so long ago and il never have my bump again, il never have my twins inside me again, il never feel them kick, and il never have that amazing love and the feeling that its ok because im looking after them. ive lost faith in myself and that hurts the same every single day.. but there are moments where i actually make sence. and i can see everthing for what it is, not through angry glasses or hearbroken glasses.

ive been put in seclusion a good few times this week. its not like anythings happened but its just that heavy like nothing matters feeling and i cant even be bothered to get up or eat or just be. i just have a meltdown and thats it for the day.

Bleurgh

not really sure what to write.. my head hurts
i dont know how i feel or what im doing or anything
maybe il update tomorrow..
blair had another seizure :(
and she should have stopped having them by now so this probably means a load of tests.. why cant everything go right for once in my life..
and ah good old seclusion. got stuck in there yesterday and on thursday or maybe it was wednesday, cant remember tbh. doesnt really matter though does it, a day anyways

Burble blog

Isnt it so strange how a few songs can bring out so much emotion yet a few hours with a psychologist or 2 leaves me feeling like im made of stone. that i dont feel enough sometimes.
maybe this proves im more in my head than out loud. im just dazed now. like whoaa whaaatttt. this seems like its just going to be a burble blog today so maybe il tell you what happened today tomorrow. cos todays not making sence
todays full of tingly words that either stab or stroke. no words just are. everything people say either stab me right in the heart and make me gasp that they can be so unfeeling. or just the opposite and im shocked by kindness. just one of those days i suppose.
everythings got its feeling out and its shape. my minds bending everything to say different things. like looking through a megnifying glass.
and everythings really bright and jumping out at me. its making me want to cry im so trapped here having this fucking dialisis. ive got a hole in my harm. whats the point of that. it just hurts. im just so broken. i can feel it today. i cried this morning and it was that heavy heavy crying that only grief makes. when air is squeezed out of your lungs and theres nothing left exept burning eyes and a sore throat.

Aqualung- a few words from Left Behind

Open the curtain,
Let some light in,
I feel so grey,
The world got smashed to pieces,
And put back together
The wrong way.

Open the window,
Let some air in,
I feel so old
There - Where we were happy,
Long ago
Yesterday

Aqualung- a few words from Broken Bones

Picking up broken words
Snipping the tips off
Grinding down the long ones
That wind around your eardrums

Dangerous plastic words
For crowd dispersal
And dumb dumb words
That could blow your head off

Down by the water and the tide keeps rising
This world is burning and I'm terrified
I need a little more time with you
Oh, I just need a little more time with you
Oh please, just a little more time with you

Aqualung- Black Hole

Sooner or later this will fall apart
It takes more than science to save a failing heart
I wanted to keep you and hide you from the sun
but no one could reach you

You say I'm a black hole
Sigularity
My own supernova
A blazing blind catastrophe
And for once I was a star
A long time before that
Somebody's sun

But enough of these pointless noises
Enough of just counting down
This is not a test
If love is not the answer then maybe I misunderstood
Oh the question
Oh there must be someway out of this

Aqualung- Breaking My Heart

I'm losing faith
I'm losing all faith

You're breaking my heart
Breaking my heart
You're breaking my heart again
Don't ask me to start
Ask me start
Don't ask me to start again
Start again

I wanna fight
Afraid to fight
Why don't i fight
And make you see
I hold my breath
And disappear inside myself

I'm losing strength
I'm losing all strength

Aqualung- If I Fall

Swept away
By the wonder of it all
So amazed
Never saw it coming
Left me dazed
And i don't know where to turn

Here and now
Seems i'm standing on the edge
Looking down
I can clearly see your face
In the crowd
Makes me feel i'm not alone

If i fall
Will you catch me

Seems to me I'm exactly where i dreamt I would be
And the view from here is
Something to see
But i need a hand to hold on to

If i fall
Will you catch me

Average day

Ive actually had a day that wasnt a complete pile of shite. i had a weigh in at like lunchtime and i drank loads of water to make it go up lol but im not sure it worked?! but im 6st 5lb now. go me. il be 7st in no time (my xmas target)
but then straight after that an eating disorder woman came to see me and tried to make me eat and i was like urgh im going to throw up and she was like NO YOU ARE NOT.. you will eat this and i wont leave til you do.. and i was like um yeah i will be sick and then bleurgh i was sick in her lap haha serves her right. i ate half a sandwich though yesterday..

blairs doing ok shes still on the vent but its normal the dr ses for babies to need support after such a big op. so shes resting and recovering..

Blair today

blairs doing a bit better today shes come round from the anasthetic. she had 2 sezures yesterday though. and shes still on a vent. but shes doing ok. she looks so so little with all the tubes around her. makes me feel so mean. idk why just i feel like i did this to her.

i just dont feel like me anymore im a completely diffrent person. ive been havein quite a few meltdowns and i cant stop them i feel them coming and thats it for a few hours. everythings jsut really intense. everything i feel is like the extreme emotion. if im happy im hysterical. if im sad im really depressed. if im angry its meltdown time. and theres just no escape from anything.

and then while all this has been going on i feel like i havent had a chance to really think about beau and idk i just need time to stop and think about her and cry. but i havent had a chance. so now i feel so so guitly. its almost like ive been ignoring her. and its all been building up so its like opened the floodgates now so i cant stop. today is my day to think about beau. but i dont know its hard to describe. i know she would want me to concentrate on blair and worry and things. but its not fair.

i cant get my head round the fact beaus not here, shes not going to be in the incubator when i go see blair. shes not anywhere. ive started being really like horrible to myself. well idk my head tells me over and over shes dead shes dead. but i wont accept it. i have everything ready back home for twins. and i refuse to beleve that when i go home there wont be twins. how can they let that happen.

when i held her for the last time and she closed her eyes and then they didnt open again i wanted her to wake up. i was angry at her for not waking up. i had her in a cot next to my bed for days. i wouldnt let them take her away from me. incase she was sleeping. incase she was just being silly and playing a game with me. i held her and sang to her and whispered her name. nothing brought her back. i didnt try hard enough.

Poem

i found this poem and it really sort of hit home. made me stop and remember beau. sighh

Your little girl cries too much,
My little girl doesn't make a sound,
Your little girl lies warm in her crib,
My little girl lies cold in the ground,
Your little girl woke up in the night,
My little girl never will,
Your little girl laughs and plays,
My little girl lays still,
Your little girl makes you proud,
But just as proud am i,
For your little girl will learn to walk,
My little girl can FLY.

the morning after the night before

yeah last night was rather crap. i had a pretty stunning meltdown and sorta scratched my arms and im not sure. i feel battered and brused now though. my head is spinning. everything jsut seems so intense right now. theres no escape.
blair is 'ok' nt the best. still under anasthetic and the dr said there gna keep her on the vent until theyre 100% positive shes ok. she had another 2 seizures last night which were scarey as hell. its a hard thing to understand but seeing your 4lb baby girl fitting when theres nothing you can do about it is horrible. i wouldnt wish it on anyone.
it was her 4months birthday yesterday too!
HAPPY 4 MONTH BIRTHDAY BLAIR!!!
you made it. mummys very proud. now concentrate on getting better princess.

and to the mum from cafemom who sent something to her friends asking for prayers. thank you. thank you so much. im getting my faith back in human kindness.
and to all the well wishers and people praying for my babys recovery. thank you.
i hope it works. i think even i have resorted to praying. and hoping. and i thought i had no hope.

blair

so blairs went in for her surgery at half 7. its so stressful. im just sat here like a lemon with nothing to do just wait. i went to see her earlier this morning and she was a bit better. i just dont know what to do with myself now.
only 3 more hours to go. if it all goes ok.

Blair

i though blair deserved a post of her own
cos shes got her operation tomorrow to put a band round her artery till shes big and strong enough to have the proper operation. my poor baby
shes still really limp and weak and cant really breathe properly and they put her on a vent yesterday..
there gna do the op bright and early at half 7 in the morning and it should take a few hours..
wish her all the luck in the world

Today

so todays been pretty crap tbh. firstly i had a meltdown which is always a great start to the day. and then i threw up which was crap. and then nurses have to come check im still alive or sumthing every 10 minutes. and then she even watched me shower which is a bloody joke. and i cudnt even shave my legs. what a stress about nothing
yesterday they had to hold my hands down to make me take my meds.. sighh
i just hate taking them so much. i dont know why. just makes me want to cry that i have to take them to be myself.