Saturday, 10 January 2009

Just stuff really..

This week has gone in a bit of a blur....I've spent hours on google trying to find a 'cure' for Cerebral palsy...with no success obviously.I've read and read until I couldnt read any more about CP and still feel none the wiser.Ive even dreamt bout Cerebral palsy and physio appointments etc.
Sad I know but just wanted to find 'something' that would make it all better.I dont know how i feel right now.....alone,confused,grieving for the loss of hope for a 'normal child' one day.Trying to get my head around the fact that this is for life,its not a condition that will go away.

Also remembering too...something which made me feel a little better in some way.I had always wondered whether her horrible experience in Leicester had led to CP (she had some really close calls whilst on the vent...we are talking sats dropping to 19%!) I KNOW that she came out of that experience a different baby...something of her mentally was lost at that point but I also remember in special care being concerned and asking the doctors why she couldnt straighten her legs....you notice this king of thing when you are holding her legs for a nappy change.Anyway the Doc really didnt have any answers and dismissed my concerns saying that it was probably because she'd been curled up in the womb....she was 4 months old at this point.Plus she always faced tha same was and didnt turn her head to the other side at all and had a right side/hand preference,she can=me off CPAP and breathed with her tongue hanging limp out of her mouth......NOW I see that my concerns were real and showed signs even then of her CP .I just didnt know what it was,just that something 'wasnt right'.
I have videos of her and now,looking at them it seems so obvious.....isnt hindsight a great thing.
Anyway at least I feel reassured that it didnt happen in Leicester although it probably didnt do her any good.

Yesterday i got my carers allowance and I have blown most of it on buying her some clothes which fit lol.... age 3-4yrs (big girly) and today some toys which i hope will stimulate cause and effect.
I got an Early learning centre drum which when you tap it makes a noise and light up different colours, a train which has balls in it which popp about when she pushes it and a spinning top which has coloured balls in it when the top is pushed down and plays a tune....she hasnt got the strength/co-ordination in her arms to push it down though so that isnt so good at the moment as I have to do it for her.maybe in time she will do it.
Finally our birth to 3 service (portage equivalent) has picked up her caseload and will come out for the first time on Wednesday.Im so so pleased this is happening as she is really behind now....well I know that she is likely to always be 'retarded' according to her diagnosis but all the same it bothers me how uncommunicative she is etc...............this is probably going to sound overly dramatic but i just have this feeling something else is going on....like an autistic spectrum disorder,there I've said it.This has been on my mind for months.....I KNOW there is something else happeing with her....its not just that she doesnt communicate,its that she has no desire to,she hates being touched and will pull away from you if you touch her hand,she avoids eye contact,she gets ...like sensory overload.she has never wanted to be hugged or kissed.None of this is normal baby behaviour is it.
maybe these questions will be answered when we see the paed in March....maybe its just nomal for cerebral palsy children??who knows.
It would be so nice to be able to sit down with someone who has a child with Cerebral palsy and chat through some of these things...and how they coped with their child diagnosis too.I know a lovely couple who have a little boy who is 6 with CP,they are SO together though about the whole thing,they know what he is entitled to and fight for it accordingly and just generally seem to be doing so much better than me with everything,where as me...well i just want to cry and feel so overwhelmed and alone at the moment. DH seems pretty ok with it after the initial freak out,but I feel guilty about it and a thousand other emotions in between.
Im going to end here before I end up crying again.

3 comments:

Hazel said...

Caroline, I feel for you so much. My heart absolutely goes out to you. Your love for your darling Seri just shines through in everything you say. You are just the most amazing Mummy.

The couple with the six-year-old: Do they have five other children to care for? Are they still reeling from a shock diagnosis? Does their little boy have several other additional medical issues? I'm not trying to be horrible, I just want you to see that you have sooooo much on your plate sweetheart. I take my hat off to you. I cannot imagine how you cope day-to-day and with no sleep too!! You well deserve to wear those Superwoman pants :)

Those toys sound lovely. You're doing such a great job stimulating her, and I'm sure it's doing her more good than you can imagine.

I see where you're coming from with the autism. I don't think you're being silly. Only time will tell, I guess :(

I wish I could take some of the pain and hurt and responsibility away. It's just not fair that you have all this to deal with. I feel like crying myself. xxx

P.S Why am I reading your blog at 2am? Lol. Love you <3

Siobhan said...

Dear Caroline,

I can't tell you how deeply I feel for you.. sending you the warmest of thoughts and love.
Regarding being in touch with other parents of children with cerebral palsy, I really think this would be a good idea for you - I mean, you have been through a very very traumatic time and you need to have a support network set up for you and someone to listen to your heartache and worries, who truly understands and has been there, and can maybe guide you a little.
I did a quick Google search, and found this charity: http://www.scope.org.uk/ there's also http://www.mencap.org.uk and there's a whole plethora here:
http://www.disabilityuk.com/masterpages/links.htm (scroll down for all the links)
There are many other charities and organisations out there for practical help and socialising/networking, I hope you can find one that suits you.
My friend is involved with a disabled charity (Enable Ireland) for her premmie son who has had neurologial issues. They've been terrific in organising lots of therapy for him, getting him the equipment he needs and getting her on specialist courses and so on (she's just finished a speech language course paid for by them). They are also very active socially. I hope there is something comparable where you are ((hugs)).
Thinking of you Caroline,
love, Siobhan

sonofnob said...

Dear Caroline!

I'm one of Claire's friends and have been following Seri's story, your troubles and your struggles. My heart goes out to you and your family for all the hardship you have been through, and for all the hardship that you are facing. You are doing a magnificent job raising your family!
I am the mummy of a now 4-year-old boy with spastic diplegia. While each child is different, the shock and sorrow that hits a parent after receiving a diagnosis (even when it has been floating around for a while first) is the same. I went through many of the same thought patterns that you are going through now. The grief you feel is real and acceptable and understandable. So is the loss! And so is the worry and the fears for the future. Most of this will never go away, but it will change, and you will find ways to cope with the CP world, the support networks, and the medical establishment. Please allow yourself to express this grief, and to feel the grief, and talk about your situation to people who will listen.
I will be more than happy to talk to you, if you are interested, and I am sure that Claire can provide you with my contact details!!!
Lots of love,
Rikke.

You may know this poem already, and it may make you cry (I cry when reading it), but still it is highlighting the beauty and joy in life with a 'special' child:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 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.