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Grief where no one has died, but are still gone

(22 Posts)
OohAahBird Sun 14-May-17 22:52:54

I dont know where else to put this, so apologies if its the wrong place, but i am grieving and there is no other word to describe it.
We were in a accident and my son was very badly hurt, he miraculously survived but was changed from the child we had.
He has facial injuries and a brain injury that means he has a different personality.
The child i knew has gone and now I am getting to know the new him.
Most days i just try and focus on the positives and that he is still with us, deal with all the overwhelming amount of paperwork and appointments, try and put our lives back together again, and then he does something or says something and it feels like my heart wants to break. Because nothing is the same
I need somewhere to put this down to say how i feel because I just have to keep going for him, i dont ever want him to see. But I need to be able to say it, and its not just the change in who he is, its the scarring, his poor beautiful face, i feel so shallow that it upsets me, but people stare and make comments they can be so cruel, we went to the park and another boy kept calling him a monster. I tell him everyday he is my gorgeous boy. I would do anything to try and shelter him from it, but I can't, so i know I just have to try and make him as strong and resilient as i can.
I feel guilty for not just being happy he is still with us, but he isnt the same child

Please someone tell me that it wont hurt like this forever

mineofuselessinformation Sun 14-May-17 23:03:21

I think you should look into counselling for yourself OP.
It sounds to me like you are grieving for the child he could have been.
It's not wrong for you to feel sad for the life that he would have lived.
But, he is still here, and that is much to be grateful for.
Believe me (my second child is severely disabled) - there is a way forward. You can help your DS to make as much of his life as possible, but you need some help and support to be able to do that.
Be brave and reach out. flowersfor you.

OohAahBird Sun 14-May-17 23:18:57

Its not just the person he would have been it was the child i had, he is 6 so his likes/dislikes personality were very much in evidence.
He was quiet and shy, now he is loud and outgoing. Neither is right or wrong, just not the same.
He likes different foods, different music, different games, it is all down to the brain injury.
I miss the old him, its not that i dont like the new him, i just miss the old one at the same time.

The whole family is being assessed for support at the moment, fortunately it is by a brain injury specialist so they have dealt with the issues we are facing before

SirVixofVixHall Sun 14-May-17 23:30:23

I am so sorry to read this OP. When I saw the tile I assumed it would be the grief of losing a parent over time to disease or dementia. I have no experience of this with a child, and I cannot imagine the heartbreak. I can say though, that with both my parents, one who had a degenerative illness and the other dementia, there was a period of grief at losing the old them, and a period of adjusting to the new reality. It is hard missing the person, but still having them there, changed. I clung on to the things that had stayed the same- are there aspects of your little boy that are still there? And I also tried to accept the new normal. I know this is nowhere near as hard as the situation you are in. We want to protect our children and keep them safe, a serious accident is incredibly traumatic when it involves life-changing injuries, and even more so when that is a brain injury. It is fine to grieve the loss of the relationship you had, with the boy he was. All the time you are building a new one with the boy he is now, and he is still your beautiful boy, and always will be.
Is it all very recent? Because brains do change over time, if his scarring is new, can it be helped further? I really hope you all get the support you need. flowers flowers

DancingLedge Sun 14-May-17 23:42:49

My heart goes out to you.

I can see how you would feel a need to grieve the child you've lost, because of the changes to him.That sounds heartbreaking.

Some people have a parallel kind of grief, when a loved one is 'lost' to dementia.

I'm glad there is some support. Presumably you have been put in touch with Headway.

Will things get better in time? Many scars, both physical and emotional, do.
Warmest best wishes. flowers

DancingLedge Sun 14-May-17 23:50:15

Sorry, didn't mean to sound trite about scars. I do see that serious facial scars can be a .huge issue.
One of my DC has some significant scars. I know scars are for life, but his have faded somewhat, and now , along time later, they just seem like a part of him, and there's no negative or sad feelings attached to them .Very different to how I felt at first.
All the best.

OohAahBird Mon 15-May-17 00:15:13

We see a plastic surgeon for his scars and a scar management nurse, he has a pressure garment and we use silicone gel on them, he will have to have more surgery and very probably a skin graft in the next year as one part is just not healing, they did an amazing job of putting him back together, he had 14hrs of reconstructive surgery and we tell him he is iron man as he is now full of titanium plates (he is into super heroes not entirely random)

mermaidsandunicorns Mon 15-May-17 00:24:47

flowers this made me cry OP

I can't even imagine how you must feel. I'm rubbish with advice but know that there are people that will listen and that you're not alone. Your child will always shine through in one way or another xxx

DancingLedge Mon 15-May-17 00:29:09

Golly, so much to go through. And knowing there's more surgery, so hard for parents and child.

14hours while your child is in surgery.
I just wanted to mark that, because I don't know what to say. 3hours felt like a small eternity to me.

I will be thinking of you.Hope you will vent or chat here when it helps.

throwinshapes Mon 15-May-17 00:39:18

Darling woman. MN hugs flowers
A great positive is that he is 6. The brain's plasticity is outstanding at that young age.
Of course you miss your boy as he was. You'll love the new boy just as much. wink

OohAahBird Mon 15-May-17 10:03:24

Thank you, its hard to talk to people in person, most of the time we just end up comforting other people. I also hate crying in front of people.

NeegansWife Mon 15-May-17 10:21:54

I understand what you're saying OP. My DF had an out-of-hospital cardiac arrest 18 months ago and his brain was starved of oxygen for 12 minutes. My amazing DM kept him going with CPR until the ambulance crew arrived. It's rare for people of survive cardiac arrest outside of hospital as treatment takes longer to reach them so I do appreciate he is still with us. He spent 3 months in a cardiac unit and another 3 months in a brain rehabilitation unit.

It's only as time has gone on that I've come to the realisation that the person I knew isn't ever coming back. His personality has changed completely, he's a shell of his former self. His tastes in food have changed, he finds it hard to make conversation as he has no short term memory. Long term memory is also affected. He doesn't remember my wedding day, my daughter being born. He fixates on things, like just wanting to watch the same programme over and over and over again.

I feel so, so guilty for missing him when he's standing right in front of me. I can still talk to him, kiss him, hug him, tell him I love him. Superficially he looks the same to everyone else but I feel my Dad has gone forever. Well meaning comments from other people makes it worse, they think he's made a miraculous recovery and that everything is great when really it isn't.

How can I complain when others have lost their loved ones and would give anything for one more touch, one more conversation.

So I don't say a thing. To anyone.

OohAahBird Mon 15-May-17 11:04:58

NeegansWife it is precisely that, i am so sorry you are going through it as well, yes i dont feel like i can really express how I am feeling because people would just not understand, though the one person who has seemed to get it more than anyone was someone whose son died from a brain tumour, and she reached out to us. But it feels wrong to seek support from them.
It also seems strangely disloyal to talk to people in real life, because it will cloud how they think of him.

hickorydickorynurseryrhyme Mon 15-May-17 11:18:17

I am so sorry OP. Writing it down andtalking about this is good and a natural response. Please don't feel guilty. I would feel the same. You are indeed grieving for the son you had as he has changed. You still have him here with you though and I am sure deep inside there are elements of 'him' still there.
Those people in the park are idiots OP.
Stay strong. Accept all offers of support and keep talking. Nobody will judge you.

NeegansWife Mon 15-May-17 13:06:12

Oh God yes Bird, I feel disloyal even thinking these thoughts. I try to tell myself it's not a reflection on me because surely what we are feeling is perfectly natural, just rarely spoken of. flowers for you.

Didiplanthis Fri 19-May-17 19:34:33

You are so brave, so strong. And everything you are feeling is so natural but I understand you feel guilty for thinking it. Writing it down where you can reflect and people can support you is a very good idea. You can't stop or help the thoughts in your head and sometimes being able to verbalize and acknowledge them is a first step to rationalizing and dealing with them. Have you been put in contact with, i think its called, 'changing faces' ? its an organization which deals with facial injury/scarring etc. They may be able to help you and your son when you are ready and if you feel it would help.

teaandakitkat Sat 20-May-17 21:53:14

You've lost the son you knew and loved but you love the son he has become. You are torn. How very very hard for you.
My aunt had a brain injury which changed her from a warm and loving woman into someone really loud and brash and always telling lewd jokes. It's the strangest thing. She's toned down a bit over the years, that was 4 years ago, but she'll never be that person again.
You do have to somehow let go of the person they were, it is like grieving.
I'm so sorry you are having to deal with this.
How is your son? My aunt seems to sort of realise every now and again that something's changed with her but she can't figure out what, then she gets upset. Usually because she's said something really inappropriate that she would never have dreamed of saying before and she realises she's offended someone without understanding why. Horrible. Hopefully your son is young enough to escape that, especially when someone said above about young brains being more elastic or whatever.
Sending love to your family x

PacificDogwod Sat 20-May-17 21:55:33

So sorry to read this, OohAahBird thanks

Of course you are grieving.
You are grieving for the child your lost, even thought you still love the child you have - totally normal and understandable.

Please seek help for yourself.
See your GP - there is help out there for parents in your situation.

Isadora2007 Sat 20-May-17 21:58:53

It sounds tougher in some ways than losing someone through death. Awful though that is there is a recognition of grief and loss and. I expectations on you. But here there is the expectation of utter gratitude and relief. Which makes your sense of loss and grief almost shameful and wrong. It's not. I urge you to get some bereavement counselling or just counselling of any sort to maybe have a safe space to be "allowed" to feel what you feel and express what you need to. Loss and grief for your son as he was doesn't mean you won't or don't love your son as he is now... what you feel is right for you. Don't feel you need to hide it or apologise for it. flowers

PacificDogwod Sat 20-May-17 21:59:48

Bird, many people feel as you do, you are truly not alone with these difficult and conflicted feelings.



I have an acquired brain injury, not one that has affected me functionally, but I have a tiny inkling of what your DC/you are going through [hugs]

OohAahBird Mon 22-May-17 15:21:26

Thank you all, it felt better to just get it out of my head and written down, most days i am ok, just keep going, but just every so often it hits me out of nowhere.
Back at hospital having more appointments today and tomorrow which brings back lots of memories, we were here a long time after the accident, fortunately DS likes coming back.

DancingLedge Mon 22-May-17 22:56:46

I am struck by your comment about 'strangely disloyal, because then it will cloud how they think of him'.

There is a real need to have a forum, here, elsewhere or IRL, which is actually about your experience and feelings.

Not your son : not because your son doesn't matter: but precisely because you matter too.
Important because you need expression: because you matter, your experience matters: and, also, you need to express your feelings , in order to be fully able to give of yourself.

That old thing: grabbing the oxygen mask first, in the troubled plane: because only by doing this, can we stay conscious enough to look after our children.

Do you have any space in real life, where you can vent, with no thought for your son?

On another note, glad to hear he likes returning to hospital, that's quite a plus.Hope all goes well.

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