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Sorry that I ramble on but really need handholding now...

(250 Posts)
Livingtothefull Fri 20-Dec-13 23:18:54

I have posted previously about my situation and have probably bored every reader senseless as I do tend to write too much. I just need to find a way to get through the time I am having:

My DS (12) is severely disabled, wheelchair bound, has epilepsy, cerebral palsy and severe learning difficulties. He has recently had major surgery and is still in severe pain. It turns out that this is caused by stretching of the nerves at the back of his legs which has only just been diagnosed & medicated (god only knows how painful this has been for him). We (DH & I) have to give him physio several times a day, this is excruciating for him & he lashes out at us. This will have to continue over Xmas.

In the meantime I am unemployed and actively jobseeking. As you know it is a very competitive market and this translates into rejection after rejection, even at interview stage. If I don't get a job by early next year then we are stuffed as we can't afford to live for very long on one income. I am scared that i may face my DS being made homeless; i tell myself it won't come to that. It is very hard to take; I am not a confident person but feel at rock bottom now. What on earth is the matter with me?

I am trying to complete a Masters degree; am on the last part of the last module so am tantalisingly close. I have one more piece of work to complete; the deadline is 7 Jan. I can't extend this date; I have already had an extension due to mitigation re my DS condition & I won't get another one. I am not even panicking, which is bad; I just sit here mesmerised my the magnitude of what I have to accomplish by 7 Jan. If I don't do it I will regret it for the rest of my life. So I have to do it....somehow or other.

What is it that seeps through this post? Anger, panic and despair......I feel that I am failing and I just feel very sad today. How do I keep going and trust that things will get better? How do I keep myself sane? Where does confidence come from? I never had it so I don't know what it feels like. I just try to tell myself that I will complete the study project somehow or other, DS will recover and next year will be better. But I am not confident of any of this & feel hugely resentful that life has to be so hard.

hesterton Sun 14-Dec-14 02:47:26

You sound a bit better , a bit less alone with your tough journey. I truly hope that you can find another job soon which takes you through to another level professionally. You deserve fulfillment.

Livingtothefull Sun 14-Dec-14 02:33:50

Just a little update:

I just want to say again how much I appreciate the support I have received from all those who have posted here.

DS is doing OK, his disabilities continue to be a concern but he is wonderfully happy boy.

The job I referred to above, has been extended month on month but is due to end at Xmas. I have gained from it tremendously at a professional level but need to find something else now.

So we are not out of the woods but I feel have made progress….need to keep being a fighter for the sake of my loveable sweet boy.

It is quiet on here tonight and, although I have no advice or wisdom to share with you, I didn't want you to think that no-one was here for you.

You survived the last tomorrow and you will survive this. You are a fighter I can tell from your posts. Tomorrow will soon be yesterday.

Holding your hand flowers

Livingtothefull Thu 24-Jul-14 23:07:04

That tomorrow came and went back on 24 June; now I have another tomorrow to contend with. Suffice it to say that there is a whole rank of problems lined up for me to deal with tomorrow. I don't want this tomorrow any more than I wanted the last one.

My friends and family have long deserted me. One very close family member told me recently that, in her esteemed opinion, it would have been better if DS had died shortly after his birth. Other family members promise to contact me but never do.

I want to not be scared about tomorrow. I want it to be plucked out of my little portfolio of problems.

Livingtothefull Mon 23-Jun-14 23:16:17

Again I wish that tomorrow wasn't coming. I think I would cope very well if I didn't always have tomorrow to deal with. I am having trouble dealing with the fact that life doesn't care that it is unjust and it doesn't care how much DS suffers.

Livingtothefull Wed 18-Jun-14 23:31:54

Here I am, hoping that through prolonging today, tomorrow won't happen.

I have to deal with a work related meeting which, to cut a long story short, is going to be traumatic. I am going to be way out of my comfort zone in dealing with this.

i find it hard to convey just how isolated i feel and have felt for a long time. How I wish I felt secure in myself, then I could focus on what I have to deal with.

Livingtothefull Tue 10-Jun-14 00:16:51

Dear Eyelet, thanks so much for posting. Going through this is so hard….how old is your DC?

My DS had a brain injury at birth also. Nothing prepares you for how hard it is.

No this is not like depression. Depression is a condition very removed from this. I feel that I am not clinically depressed but am having a legitimate response to an extremely difficult, challenging situation.

So I am not suicidal (whatever above may imply), because I am so entirely there for my DS and that will never change. I am not mentally ill and I would never ever want to pass judgment on those who are. I am (I think) a sane, reasonably emotionally healthy person, trying to process what is almost incomprehensible/unendurable.

Watching one's DC suffer is something that would not sit well with any parent; for me and for many parents, it is something we have had to live with since DC was born.

Having a DC with special needs can be incredibly isolating. Eyelet I am glad you are getting support online. I don't want to preach to you but please pm me any time if you want support. I wish all the very best for you and your DC.

Eyelet Mon 09-Jun-14 22:08:11

I just wanted to xhime in ans say that I do understand part of what tou say about your sons birth breaking you. My first born had a brain injury at birth. She has overcome so much but isn't the child I carried for so long - I have found much support online from hypoxia groups because nobody else ever really understands that birth bit.

I've had so many conversations where people have suggested I'm depressed. Usually I'm not, I just have a hell of a lot to process and I can't quite accept yet this is our path . I rage against it!


Livingtothefull Mon 09-Jun-14 21:50:48

Thanks Silvery, yes I am making progress. It all feels like a struggle but when I look back over the past couple of years we HAVE made progress. DS has come through his surgery, I have finished my studies and the work that I am doing now is more worthwhile.

I have been at my worst here but I don't think I am an excessively negative person (though occasionally have given full vent to my negativity) in real life I just get on with it.

Reg - that is good to know. I think that my thread has been self indulgent & negative but I would like to think that one day I could write something that someone would benefit from.

It sounds daft though but I'm not sure how to go about blogging…how do I publish it? (sorry silly question).

My dear boy was so sweet today. As he is in my life it is impossible to be sad for long.

RegTheMonkey1 Sun 08-Jun-14 16:48:05

Living, I have an acquaintance who blogs about living with a severely autistic child. I helps them clear their mind, and it's much appreciated by other parents with autistic children as they realise they are not alone in their daily struggles - and joys too of course -.

TheSilveryPussycat Sun 08-Jun-14 00:26:32

Hello Living, just found this thread. As usual, there is little I can say, except the obvious, that you are having to live in circumstances which must make the universe seem very cruel. I see you have moved forward substantially with your study and work; (and was there once a difficulty with an older close relative, or am I mis-remembering). Maybe a tiny part of your mind thought that if your work situation improved, so would DS, by some sort of miracle by association, or perhaps the improvement in your work situation has given you more opportunity to notice and ponder what could (and should) have been. Also, re the phone thing, DS is growing up, and though they may do it more subtley, that kind of pissing off people rebellion can be done by many adolescents. Was a telling off not enough, though? You did the right thing in not ignoring it, imho, fwiw.

Forgive me if my post is clumsy: and accept my warmest wishes

Livingtothefull Sat 07-Jun-14 21:39:59

Thank you Reg, I am indeed getting satisfaction from my work so the longer it lasts, the greater benefit both financial and career-wise. No guarantees but here's hoping it lasts for a few months longer.

I honestly hadn't thought of blogging. That's something to consider and explore - thank you. I would however like anything I wrote in a blog to benefit somebody somehow. Instead I have been rattling along in this thread, in a self indulgent way, about how hard it is to deal with massive challenges and the toll these takes. I don't expect anyone to respond really and am just so appreciative of those who do.

My poor boy went to his social club (local facility for special needs youngsters) today. We got a call that he had been taken to A & E as he had had a seizure. He is all right now though he said his head hurt.

On the way home to see him, I passed a group of youngsters about DS age, out for the afternoon. I saw them strolling along & then the thought struck me: 'That could have been my DS, he could have been one of them, his life could/would have been like theirs now if THAT hadn't happened'.

THAT being the brain injury he had as a baby. His disability is not genetic but the result of an injury. The pain really hit me then as it periodically does. That is what I am about now: having to live with a 'what might have been' that is unendurable if i were to go down the path it wants to take me. Having to live with a tremendous pain and keep the distinction between it & me; let the pain do its thing over there while I get on with living my life here.

RegTheMonkey1 Sat 07-Jun-14 14:54:10

I'm a bit of a lurker, but I've read your full thread and I really and truly feel for you and your boy. I'm so glad you are getting satisfaction from your job and I hope they will keep you on, or if they don't, that it leads to something else. You are so articulate and write so well, I was wondering if you'd ever considered blogging? Perhaps you wouldn't have the time, but it would be a great outlet for your obvious creativity, and it might be welcomed by other parents who are living with children with difficulties.

Livingtothefull Sat 07-Jun-14 00:54:47

I don't know why I post here. I don't know why, on a public thread, I chatter away anonymously on here. I am a beaten-down, broken-up person. A run of the mill person. But there are no superior persons. There are only superior standards. I think that, largely, we are as superior as we choose to be.

So what keeps me this side of suicide is only this: that it would be the wrong thing to do. Sometimes, when you are in despair, morals are all you have. They clothe the otherwise-naked soul and, at times when it despairs, preserve it from doing anything dire and deadly. Those times pass and it then gets on with doing what it must. I MUST care for DS.

What I have seen my boy go through, broke me. I knew when he was born that I was a broken person. I can never ever talk about what it was like for me to see my DS suffer like that. But I get up every day, bitter broken husk of a person that I am, & care for him.

The worst is, that I am in a job now where, professionally, I am really growing. I am doing the work I am trained for & it is good. But I have to live with the knowledge that my DS will never have the chance to achieve what I have. It's normal for a parent to want the best for their DC. I know that he will never have that. He has much that is good - he is loved, he is cared for, he is a happy boy - but it isn't the best. So: a nugget of misery pollutes the core of everything that is otherwise good.

Livingtothefull Tue 03-Jun-14 23:07:30

I have come to the end of a long hard day.

Anyone would be happy and proud to have a DC who loves his life, tells his parents that he loves them, and is full of energy and enthusiasm for the day ahead. I am indeed happy and proud; but even so, to have that love, energy and enthusiasm coming at me relentlessly at 3am in the morning is not easy. The sentiments are welcome, but not the timing.

And then I have to get on and do my day job…ho hum.

At work I am so afraid of failing that I am a quivering, nervous lump of jelly. Fear is constantly screaming in my ears: 'You are a quivering wreck and don't ever forget it. However much you might aspire to be, and hope that you are, something better; abandon such hopes. Mere jelly you are, and will remain'.

I wish I could stop feeling this way. I need to stop caring about what people think of me. I need to get out of myself and stay out, just get on with dealing with what I have to deal with. I think my life is quite tough actually, and I need to stop worrying about how my poor little ego is coping; if I insist on dragging it with me into the fray, it is inevitable that it is going to get hurt. As I am, continually.

Livingtothefull Sun 18-May-14 10:55:58

In last night's post I accused other children of not bothering with DS. I don't think I was very fair tbh and it wasn't a kind thing to say about children.

I think it is fear of the unknown that causes them to keep their distance from DS and avoid engaging with him. But it is a rare parent that encourages their DC to overcome their fears and reach out to my DS.

Livingtothefull Sun 18-May-14 10:24:23

I am really glad pog100 that you are angry that better support is not provided to the vulnerable. Thank you so much for your anger. Attitudes can be changed over time and I hope that things are very very different by the time DS is grown up.

Livingtothefull Sun 18-May-14 10:20:11

Thank you pog100 for your very kind post. Yes I am hoping tomorrow is better and the day after that. I am planning already for next Xmas to be much much better than the last one: DS happy and not in post surgery pain, me with my studies down, (hopefully) in work and generally with my act together.

I did the best I knew how to do re the situation with DS yesterday. The point I am trying to make is that I can only punish by withholding some of the things he can enjoy, and these are so few that the punishment always seems disproportionate.

Re supermarket situation: what angered me is that this is a supermarket that prides itself on the quality of its product and (presumably) service. But in a fairly large branch they had just one dingy, rubbish strewn wheelchair trolley. Compare and contrast please, with the rows of clean, gleaming trolleys provided for everyone else.

What does it say about the attitude of the supermarket staff, that they don't provide a service for their disabled customers at least as good as that for the non-disabled? What does it say about the attitude of some customers towards the disabled, that they use the wheelchair trolleys as litter bins for their used food packets and snot rags?

I don't think this is acceptable, I don't think I am asking too much.

As I say, the anger seems to be emerging now that the fear and sorrow have receded.

pog100 Sun 18-May-14 00:37:13

I didn't want this to go unanswered though I an afraid I can't be much help other than to say that I have read your thread and that I think you are a terrific mother. You are so thoughtful and empathetic to those in your life that you love and of course they love you too..
Yours is obviously a very hard situation and it makes me very angry that we as a civilized society are not offering more of the support that you so clearly need.
The job situation is unfortunately one that many are facing and I am sure that your obvious talents will soon be used in a fruitful situation, as you say yourself you can only keep plugging away and eventually it will turn up.
Please don't be too hard on yourself regarding your parenting skills, it is immediately obvious that they are fantastic and any child would be blessed to have a mother half as good as you. I am sure that you handled today's situation as well as was possible in the circumstances.
I will be thinking of you tonight and I hope tomorrow feels brighter.

Livingtothefull Sun 18-May-14 00:14:46

DC is an only child. The neighbours' DC, our friends" DC and his own cousins don't bother with him. For a gregarious boy he is very socially isolated.

Livingtothefull Sun 18-May-14 00:11:09

I think I might be a terrible mother.

One of DH's elderly relatives overseas had a birthday, we rang him up today to wish him many happy returns then put DS on the phone to wish him a happy birthday. He said 'F--- off' instead.

I'm afraid I went ballistic on him and told him I was ashamed & disgusted with him, that I couldn't bear to look at him,that DH (who had gone out) couldn't bear to be in the room with him. I was so angry and disappointed in his behaviour. Just half an hour ago I had been talking to him about him needing to tell us when he felt angry/sad and the reasons why, rather than lashing out at people in a rage.

He knows it was a bad thing to do, although he had learning difficulties he knows that & did it to get a reaction. I suspect that our little chat beforehand may even have triggered him, he might have been testing us out to see what he could get away with. Is this something that regular children do?

Anyway I thought that I needed to show him that he had gone too far and really berated him, then told him that I was not cooking his favourite meal that we had planned for me to make. I am sticking to that too. In the end he looked so shamefaced and said sorry over and over again.

I am sitting here this evening feeling really guilty and fearing I have been too hard on him. The poor boy is stuck in his wheelchair, very little social life and very few things that he can enjoy. Is it any wonder that he lashes out on those around him? But I am scared that if his behaviour gets out of hand, nobody will want to know him and he will be even more isolated. I won't be around for ever to look after him, I am scared of what his future will bring. I wish I could go upstairs, wake him up and hug him….but I can't protect him forever.

Livingtothefull Sat 17-May-14 17:30:03

Thank you both. As I say we are not out of the woods yet but then we never will be. But at the moment I am coping day to day so things are as good as they can reasonably be. The job is going OK and I am finding it interesting though only time will tell if I am good enough to impress.

So at least I have hope that better times will come.

I do find that sometimes I get angry when previously I might have just got upset. I have had a few run ins. I complained to Customer Services in Waitrose today because there was one solitary, rather battered wheelchair trolley. It was full of rubbish, used paper hankies etc.

I had a bit of a rant I'm afraid & thoroughly embarrassed my DH, he thought I was way over the top & just wanted to get on and do our shopping. But I can't describe how this stuff winds me up. I just want to come to the supermarket and have a choice of clean, working trolleys waiting - like other customers. This kind of stuff - disabled provision done badly - upsets me almost more than no provision at all.

whitsernam Sat 17-May-14 14:07:04

I remember you! What lovely news you've shared.. I am so glad for you, and what proof you have that you are stronger than you knew.

As a long time lurker on this thread, thanks for updating!

So glad things seem to be on more of an upswing at present.

Livingtothefull Fri 16-May-14 23:13:20

I want to update on my situation. But first of all I want to say how much I appreciate all those who have written here and who have offered (and given) support. I can't say how much it has meant to me and I will NEVER forget it. Thank you all so much. I have read and reread EVERY post here.

I have a job at the moment, which I started a couple of weeks ago. It is an interim role & I don't know how long it will last (hopefully till August, maybe longer) but for the time being I am working an a rewarding and challenging (for the right reasons) role.

I am on anti anxiety medication which has helped me. I don't think I have been depressed so much as emotionally overwrought. I didn't have any means of controlling my fear, it was out of my control; no sooner did my physiology perceive a problem than it threw adrenaline at it. it has become a lot easier now to contemplate and tackle problems with a degree of emotional detachment. And that is a huge help.

DS does not have osteoporosis - big relief! Nor will he (at least for now) require further surgery.

I don't know what the future holds for DS & for us all & I am scared. But for the time being at least I am coping.

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