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My Wee Boy - Part 2 - Brain Cyst


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Hi,

I know that the SAH thread does not cover my wee boys brain cyst but I'm finding it harder to cope with this than with my own 'brain failure'.

He had his 1st follow up appointment today - despite my efforts - it's been like aftercare for my own illness - they fix you & send you home - then nothing! His neurosurgeon agreed today that his recovery has not been as good as expected, despite the shunt being fitted. I am trying to stay strong and be positive but I have never known fear like this even after I finally understood the severity of my own SAH. I could learn to accept a bad outcome for myself but really cannot deal with the fear of a bad outcome for my child. I have posted in the past that it must be so much worse for family to stand by & watch. I am now starting to understand the pain & fear that comes with this.

I think that even without my own limitations this situation would be beyond what people are able to cope with. I'm sorry if this shouldn't be on this forum but maybe other carers could help me deal with it all.

Michelle x

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I can't think of anything worse than dealing with our childrens illness.

JayKay is right, a carers group could be really supportive if there is one you can access? My eldest daughter inherited my bone disease and I do find it hard taking her for scans and check ups etc so can only imagine how hard this is for you xx

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Jen, Fiona,

Thank you. I have searched the web & posted on brain cyst (USA) forums - there is just nothing like this site.

The brain injury support worker who has helped me since last year has tried to make contacts for me, no luck so far. I can't stop crying today, i'm totally broken up inside and would go through the SAH over & over again if it would make him better x

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I If crying a river would make you feel strong,

Believe me Honey, that wouldn't take long

If taking my life would make you feel well,

I'd tell all my loved ones to go to hell,

If selling all that I own would bring back your health,

there's nothing I own to equal that wealth,

If I could hunt down the bullies for the taunts that you've had,

my whole life's journey will be to make their lives bad.

If I could thank all the people who are desperate you stay,

their happiness I will always pray.

Now they all know you are not thick, you are bright,

I hope they still feel their behaviour was right.

It's not just your peers,

it's their parents too....

I'll say it for you Honey

- SHAME ON YOU!!!

hope it's ok to share this on here - might mean a lot to a lot of people, young or old...

Michelle x

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hi chelle

i know how you feel big time im not sure how long its been since your son had the shunt placed but it can take up to six months before the brain will reajust dont forget its been hurt much the same as you were please have a little more patience please you have my number scream as much as you like with lin and her shunt it took more time to improve and it will in its own time we are not machines we are individuals and everyone is diffrent please hold on there it is hard but everyday you look for something new in either speech or what he does and he is in a better age group for what they call brain transference where the other side of the brain picks up the signels and takes over my dauhter who suffers from cerbal palsy who was written off now leads a normal life so there is hope hugs and cuddles chelle

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Hi Michelle,

Sending big hugs to you .... as parents, most of us here will be able to empathise with what you're going through and my heart goes out to you. xx

I've just found the following website http://www.arachnoidcystawareness.com/#!aca-uk it may be something that you've come across already, but it's an organisation that's also based in the UK.

ACA UK Virtual Support Group Meetings - Every Monday night at 9pm London time in the ACA Network Chat room. All you need to do to join in is register on ACA Network (button is up on the top left hand corner) and click on 'My Apps' and 'Chat' once you are logged in. ACA has a very large UK community, and if you are in need of some support please do not hesistate to stop by and join in the conversation.

To sign up for it, go straight to http://arachnoidcystnetwork.com/acanetwork/home.php

However, you are always more than welcome to continue to post here...:-D

Love Karen xx

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Michelle sending you huge (()) & prayers for you wee man. I totally know where you are coming from with your poem. I felt so defensive of my little boy just at school so I know if I had to take on the world for him I would.

I truly hope those websites can give you lots of support & comfort but hope that we can give comfort where we can too.

Send our love & good wishes to your son xxxx

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