goldfish.girl Posted April 18, 2011 Share Posted April 18, 2011 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 Quote Link to comment Share on other sites More sharing options...
JayKay Posted April 18, 2011 Share Posted April 18, 2011 Oh sweetheart, I'm so sorry you have to cope with this on top of your SAH. I completely understand - it's horrid when our kids get sick Is there a carers' support group near you that could help? Take care x Quote Link to comment Share on other sites More sharing options...
FionaH Posted April 18, 2011 Share Posted April 18, 2011 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 Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted April 18, 2011 Author Share Posted April 18, 2011 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 Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted April 18, 2011 Author Share Posted April 18, 2011 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 Quote Link to comment Share on other sites More sharing options...
paul99 Posted April 19, 2011 Share Posted April 19, 2011 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 Quote Link to comment Share on other sites More sharing options...
Karen Posted April 19, 2011 Share Posted April 19, 2011 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... Love Karen xx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted April 19, 2011 Author Share Posted April 19, 2011 Thank you Karen. I've spent hours searching the net but hadn't come across this. I've registered through the link you posted - thank you. Michelle x Quote Link to comment Share on other sites More sharing options...
Gill C Posted April 19, 2011 Share Posted April 19, 2011 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 Quote Link to comment Share on other sites More sharing options...
JayKay Posted April 19, 2011 Share Posted April 19, 2011 Oh that sounds great - isn't Karen fab??! Hope you can get some support there. It's so true, people who haven't been through it don't know how to support us and it must be the same with your little boy's condition. Take care! Quote Link to comment Share on other sites More sharing options...
Sandi K Posted April 19, 2011 Share Posted April 19, 2011 Michelle, sending you and your little guy hugs. He is such a brave boy and you have the biggest heart in the world. Xoxo Sandi K. Quote Link to comment Share on other sites More sharing options...
maggie Posted April 19, 2011 Share Posted April 19, 2011 Michelle, hope things start to improve soon, there is nothing worse than your child being poorly and you not being able to mend it. Sending lots of love best wishes and hopes that you get some help xxx Quote Link to comment Share on other sites More sharing options...
Vivien Posted April 19, 2011 Share Posted April 19, 2011 Sending my best wishes to you and your brave little boy, I know how hard it is when your child is ill. Vivien x Quote Link to comment Share on other sites More sharing options...
Tina Posted April 19, 2011 Share Posted April 19, 2011 Michelle, sending lots of love and hugs, my thoughts and prayers are with you and your brave little boy. Take care love Tina xx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted April 21, 2011 Author Share Posted April 21, 2011 Thank you for all the lovely replies Michelle xx Quote Link to comment Share on other sites More sharing options...
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