Our life's continue to be a battle. The dreaded accident is coming up to 3 years, and still finding things very hard. Sophie as just started Secondary School, fighting to get support for her and who pays for it. She as settled in better than i thought but it is very early days. Jack continues to do well at school, but without his one to one things would be a lot different.
With the anniversary of the accident coming around, and that day our lives changed forever, i still remain very angry and worry about their future massively.
Got lots of decisions to make and I just hope i don't let them down by making the wrong ones, such a difficult never ending journey.
I have also just returned to work, after 3 years off to look after them, so finding that very difficult to fit everything in, and their needs have to come first.
I would love to turn the clock back.
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julieljs
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Yes I joined the forum 3 years ago ( 9 months after my SAH ) and I remember you first reported the accident around the same time. It was a shocking story and, if I'm honest, I didn't expect either Jack or Sophie to get to where they are today.
And a massive part of their success has been down to you pushing constantly to provide for their needs and quality of life.
I don't doubt for a minute that you'll win the fight for support for Sophie. You made good calls when Jack started secondary school, despite so many doubts at the time, and I'll bet this time won't be any different.
You must still be under incredible strain from raising those two gorgeous kids single-handedly, amidst all the untold daily issues and, as I've said before, I have nothing but admiration & respect for how you've held everything together ............................... and now you're back at work !
I'd love to hear how things go for Sophie ; I really hope support will be provided for her before long.
Please accept some cyber-hugs for the three of you, and lots of love and best wishes. You're amazing Julie.
As a mum you feel you have to make the best decisions for your children.
I have 2 out of 3 children with A.S.N. I have done battle every year at some point for them and the youngest of them is in his final year in school.
Going back to work is a massive step. It is ridiculously difficult to stop thinking about your children and the what ifs to begin with, but it gets easier.
You will start having that other part of life that you forgot to miss. Socially and emotionally disconnected with ordinary folk you soon adjust to life revolving around Drs and hospitals and other appointments. School reviews and disbelief that you would need to constantly apply pressure to get the support everyone says is needed but the school can't fund, or your child transitions and the stress of de ja vu. It's worth it and hopefully once you have your plan in place you can relax. It's great that your children are doing well in school. Do they think there is a problem at all? My son was oblivious but he had his buddy and they stuck together thru school.
It's difficult when you reach that anniversary date but please remember that it holds no power over you, other than that you give it. Some horrid and life changing happened 3 years ago. That day is gone and thankfully never to be repeated. I must admit that it wasn't till all the legal stuff was concluded that I managed to apply that thought process to the date!
Thank you for your reply. It all comes down to money and funding at school.
Jack as kept alot of his knowledge from before the accident and with been older Sophie had more knowledge. Sophie is really struggling with School and far behind her peers, she cant learn new information very easily. just hope main stream school is the best place for her, time will tell xx
I know what you mean about not letting your children down. But rest assured that whatever decisions you make will be the right ones for you and for them.
I would just like to say how entirely justified you are in feeling so angry and resentful about the ongoing battle. My child was born with his problems, it's me who had the brain injury but I too have had to fight for care pathways, for finance, for his school place etc etc. Each year there has been several major battles for either one of us with one department or another. It's physically, mentally and emotionally draining to an extent others have no comprehension of ... on top of how down right difficult it is to care for our kids in the first place! I can imagine how hard the last three years has been for you having done it for one.
Has anyone offered you help with processing all of this? I know finding apt time for yourself on top of everything else is probably not viable but at some point I think it would be helpful to try and get some time and someone to help you deal with the fallout. It sounds like you too are a single mother (?) and when the sole responsibility of managing this is at your feet staying well yourself is so very, very important.
You can only make the best decision possible with the information you have at the time, trust your judgement it seems to me you're doing a great job for them. If decisions need reviewing at a later date when more information is available then so be it. It doesn't mean you made the wrong choice in the first place. We have changed directions a couple of times as circumstances have developed. I know the work involved in changing things can be enormous but go with your gut whilst keeping an open mind, Mum's instincts are usually right! Did you get her in mainstream or go with SN?
Have you just relinquished carers allowance in returning to work? That system is a joke too isn't it! Universal credit was supposed to be addressing that anomaly but Lord only knows if it will ever come to fruition. I hope work will help to change the current circumstances in a positive way. I have just started volunteering and am enjoying a different focus.
Dans right though, the anniversary is just a date .. you deal with this day in day out, the day of the accident makes that no more or no less. If it's the actual events that come streaming back more than is usual then even more I would advise some form of support to help you process it all. Anniversary's are well known to spike symptoms of PTSD.
You are doing a fantastic job, please take care of yourself too. X
Thanks for your reply. with school its the funding and how much the school contribute. I do get very angry and some days think about nothing else. The anniversary of the accident is always going to be a raw event which i will never forget xx
You echo everything I feel about what has happened to my daughter. Its 18 months now but still feels like yesterday when the police knocked on my door and life changed forever. I think as parents we all go through the anger at how unfair life is, Niki was a paramedic helping others so why her... but why anyone who is decent. There are so many "air thieves" as one of her colleagues once put it to me that pump themselves full of rubbish or do evil things and yet it always seems that their deeds dont catch up with them. I was agnostic before the accident but now Im totally atheist as Ive lost any kind of religious belief. I worry about everything and the future so you are definately not on your own. Only this morning she got a bit of breakfast stuck and stopped breathing for a short period. Luckily I was working from home so rushed to help her carer but dread to think if I hadnt been here as she fell to the floor and carer couldnt lift her back up to be able to clear it. All I think is why did this happen, what did we do wrong. You will make decisions out of love so dont beat yourself up about them being right you are just doing your best as we all do. I dont know if things will ever get better for Niki as its left her with so many issues , not being able to walk or talk, the swallowing , the fatigue, the dislocated shoulder that gives her so much pain, the vertigo, the eyesight problems and as you say everything is a battle to get help because the NHS is so stretched and so is the education system. All we can do is try to get support from each other and Ive found some of the posts on here very heartening so I get through each day as best I can and live in hope things will improve with time and therapies. Sending you love
Thanks for your reply, and sorry to hear your story. You really do echo everything that i feel. Every day i think why us, and would love to turn time back. My children and our lifes have changed so much from that day. They are totally different people with different personalities and behaviours. The future scares me, and them been independent worries me massively. I take one day at a time xx
I had the why us's acutely when my son was very young. He has congenital heart conditions, rare and complex. The chances are 100,000s to 1. He has several major open heart surgeries to face as a teenager and years of adulthood are no guarantee.
At 18 months old he threw a tantrum, his head hit my chin and two weeks later I had a serious brainstem stroke. The impact tore a neck artery which caused the clot. The A&E doctor then sent me home undiagnosed when the chances of a second stroke killing me were frighteningly high. I lost all chance of early treatment, I spent years rehabbing when it could have been very different. I should have sued, but that's a different story.
Millions to one chance that such a minor accident would cause the tear, never mind the subsequent stroke. The hole in my brain could not be any closer to my respiratory centre without me being dead and I do accept that fact has perhaps influenced my more philosophical look at our circumstances.
The point being, six years down the line, the why us's from both events have now, at least, become non consuming. As contrite as it may sound I do believe it is the one element of these tragic moments that 'time heals' is applicable to. Even the anger I harbour towards the doctor has left the forefront of my mind.
I realise it will be of little help or comfort now but the pain and tears that flood as the 'why me, him, her, them, us' screams around clenched fists will subside.
The worry doesn't go away, but the anger does. Xxx
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