Accuired brain injury

[Tonicwater]

This is my first post, so I hope I have done it right.

I have a DD who up until the age of 2.8 was NT. She had an illness that resulted in her being left with a significant brain injury. She now has quad cp, moderate learning difficulties, visually impaired and more recently developed epilepsy

She is now 18. I find that I can't help but feel what if she had never been ill. What would she be doing?

Thanks for reading.

Hiya Tonicwater and welcome to SN.

My child has a different dx but I recognise that feeling of what if, even with an unknown aetiology. What if I hadn't taken that med in pregnancy, had an induction early / been allowed to go overdue, etc etc....

I nsuspect that it's natural with any LD / Sn dx (and with bereavements as well, especially when there are milestones and setbacks- so a new challenge of epilepsy and her hitting 18 probably both count into that.

I wonder if you have had any counselling? Dh has had some recently and it has helped him.

Thank you Peachy and mumslife for the welcome.

I think you are right that I do need some counselling. I had some soon after she was ill. I found it very to difficult to understand that one day I took my DD to hospital and three months later I bought a different one home. I hope that makes sense. It really helped me at that time and I will see about having some more.

I had thought I had worked through how I felt. I guess her turning 18 and seeing her what her peer group are up to has raised the feelings.

It just not fair, is it? I really understand. On some days I just cry and think how unfair it is, why does my DD have to be the 1:20 000 000 (that's how my wobbles manifest). I think the being out of my control is contributing to my feelings. I think "if I only had known, I might have even chosen to go for it", but I was never given that choice.

Hi glimmer

It isn't fair. I feel that at times why did it have to be my DD. Other times I do think why not my DD. I am really lucky though my DD has taught me far more than I would have ever known if this hadn't happened.

I think I agree it must be especially hard if your child has been NT until their brain injury, because you've come to love 'that' child and suddenly there is a different one (different as in problems) to learn to love and care for. DGS was starved of oxygen at birth so we knew there would be a risk of problems and he has CP, so we have never known him as different, but DD and SIL and all of us still mourn the child he would have been if he'd been got out 10 minutes earlier.

Its hard no matter what, especially when other mums stare at your child as though he's got 2 heads when they don't realise it could have happened to them or anyone.

Hi Tonicwater.. I think it may be good to have some more counselling.. I've had it a few times in last 5 years and it helps me to move through the different stages of my feelings about our life with dd, who has Tuberous Sclerosis ( SLD / Epilepsy)..

I think with each developmental stage there's another set of losses to contend with.. dd was developmentally on track and seemed fine til she was 14 months (she had a seizure at 10 months but nothing after that til 14 months ) then the epilepsy took hold including Infantile Spasms and she regressed almost overnight.. It's a dreadful shock that's so hard to get your head round..

I think it comes in waves for me, and I imagine we'll all have those waves of feeling 'what if's?' now and again in varying degrees of severity - probably forever.. You have survived many years though and you are an old hand now in my terms, but I guess you might be very worn out, so I think it's probably normal to have wobbles every now and again.. it can be a very tough daily grind emotionally can't it.. with lots of sadness.. well I feel I have that anyway..

I always remember a quote on here early on in my journey from Pagwatch who said that you don't really ever comes to terms with your childs disability, but you come to terms with not coming to terms with it.. I guess for many of us that will have to be as good as it gets... but I still find some comfort in that comment. I at least know that when I feel like you're describing, it's ok to feel that way..and we're clearly not alone in feeling that way.. Take good care of yourself.

Tonic water, I really understand, my DD regressed overnight at 2.10 and became like a different child. We had thought she was gifted and today she is off to SLD school. It's hard to accept. I agree counselling helps a lot.

And yes the milestones bring it up..for me, starting school, turning 18 is another one

Thank you all for your replies.

sneezcakesmum I think you say it well when you say about being looked at as if you have two heads. People don't realise what is round the corner and what can happen.

DJAngel. That is a really good quote. One that is very true. I always used to think I would never come to terms with it but would accept it. I now think that maybe coming to terms with it and acceping it are both the same anyway.

FanjoFortheMammaries. I hope your DD has a good day at school.

That is a very good sentiment about coming to terms with not coming to terms with it all DJ! And its so true tonic about staring, like mums of disabled children actually choose this road, therefore its OK to stare! As private people DD and myself hate this aspect more than anything, but are toughening up.

I think TS and epilepsy are especially cruel to our children. DGS thankfully outgrew his early vacant episodes, but we are still anxious and jumpy about them returning. I think us both being quite optomistic people willing to put every available minute and every available penny into working towards an independent life for DGS is what keeps us going, but yes there are always days that bring you down.

DD had counselling and it definitely helped, but basically nothing is going to make the CP go away, and it gets easier, thats about all you can say. Parents of disabled children I think, sometimes have a deep sadness inside that they disguise well, but perhaps thats why they are such compassionate, caring and non judgemental people in the end.

sneezecakesmum I agree with your post.. parents of disabled children have a deep sadness.. I went on a course once and it was described as "chronic sorrow" - that just about summed it up for me I thought.. I do feel I'm becoming quite bitter and twisted though.. and yes - TS and epilepsy are pretty cruel.. We're lucky we currently have good control of the epilepsy but we live in fear of it returning with a vengeance.. Anyway.. it's a tough journey but at least we are not alone..

Tonicwater ds1 developed typically until about a year old when he regressed after an illness. In his case it's less clear cut what happened (although I don't really watch early videos where h had more speech sounds than he has now) and he was younger so lost potential rather than actual skills as many on here.

I found it useful to use what happened to him as a way of changing decisions we made about ds2 and ds3 (and in ds3's case I think this was crucial tbh) - but yes at moments I feel terribly sad.

What's helped us a lot has been finding an activity he can do and enjoy. It sounds cliched but it really has made things a lot better - I think because he's so happy when taking part. (he's 12 now, non-verbal, severely autistic).

I agree about milestones. I found last year when all his fellow babies went off to secondary school heart wrenching. I had to turn off Facebook for a week or so. I know now though that with those things it passes, I don't feel guilty for having the feelings (I used to) so i just roll with it and know it will pass.

saintlyjimjams. I can umderstand what you say about watching the videos. I have pictures of her taken shortly before she was ill, that even though it has been nearly 16 years I have never got the film developed. I know I will one day.

I agree about other DCs. I have an older DS who for quite a while couldn't even sneeze without me thinking it would happen to him.

I do consider myself very lucky as a least I am one of the very few who have an answer as to why she has her disabilities.

My dd had an accident when she was in reception class. I remember running to call an ambulance, we were in the middle of nowhere and my mobile phone didn't work. I thought she was dead at the time as her eyes were open and unresponsive, I left her with my friend as I ran and ran. During that time I was searching for a person with a phone I prayed and prayed that she would be alive even though I knew she was dead. I said to God that I would take her anyway she came just so long as she wasn't dead. While she was being blue lighted with police outriders to the Neuro Unit at a hospital 30 miles away I said I didn't care so long as she was alive. When she came round for the first time in hospital I said I would never forget that I could have lost her.

The only thing that has got me through these years isn't the thought of the child I lost before the accident it's that I could have lost her completely.

It has been a hard road and sometimes I wondered why this was happening and what my life would be like, all the friends I would make as opposed to people avoiding us. It's easier now as she is 11 now and has made so much progress from the child who didn't talk, smile or communicate for a whole year.

I do sometimes feel sorry for myself but I do think the alternative would have been far worse and that has always kept me going.

I was recently asked how I felt about it all (disabled child) & I described myself as chronically sad. It doesn't mean I'm not happy on top, and proud & adoring of my son but underneath is a deep river of sadness that I don't think will ever dry up.

I've been watching videos of ds over the last few weeks & have seen the regression all over again - April & May he was pointing, communicating responding, June/July he was quieter & responding less, August he stopped pointing (I re-taught him), September he was mute, not responding at all to his name. He didn't speak more than a couple of words a week until the following March. It is just awful to watch. Horrendous. Sickening.

second what has been said about the need to revist counselling again and again if necessary. ds was developing normally (I thought) if a bit slower until 2. Even at 3 his pre-school said he was fine well within normal range (tho by then I knew they were wrong). Now at five he is statemented at MS and will need to move to SS within the next couple of years.

When ds was 4 it just hit me like a ton of bricks and all the additional health issues he has really got me down. I used to cry every day - sometimes on the way to work -cleaning myself up before the office.

Eventually i had five sessions of counselling and it did really help but it hasn't in any way got rid of the sadness (that chronic sadness as has been said - that is a good term for it). What it did do is give me some ways of thinking that help me live with the pain - emotional pain management.

I can really see that as new stages or new information about the prognosis come about that your coping strategies stop working and you can need help to adjust