How do you live with the knowledge your child is going to die?

[TheDMshouldbeRivened]

Thought it was about time I asked. We were told earlier this year. They can't say when except it could be any time.
But the anxiety is getting worse and worse. The fear of waking up and finding dd 'gone'. I no longer sleep because i'm too frightened. If I stay awake maybe I'll catch the seizure or not breathing and stop it happening. And the fear that I will go completely to pieces when it does happen.
A few months ago I woke up and she wasn't beathing. i put my hand on her and nothing and had that awful surreal hollow feeling thinking 'this is it. Its actually happenend'. I turned on the light and shook her and she took a breath. So now I cant sleep. The fear has been growing and growing and I don't know how to live with it
dd is 5 and a half. I feel like my whole life is weighed down by this and its preventing me appreciating the time we have left. I have other children (teenagers) but cant see how I could survive it

Oh riven I don't know.

Riven I don't know you but just want to say that when the time comes you will cope, don't punish yourself now and try to deal with two stressfull situations at once. Dealing with an ill child and dealing with losing an ill child - it is too much for anyone to deal with.

Deal with issue one first - Get all the practical help you can eg monitors, decent care assistants, anything that can give you sleep and a bit of recharging time and spend all that worry time on looking after yourself and you DD.

I am afraid that I speak from experience and although I will never get over things, you will and do have coping strategies which means that you can function when the worst has happened.

I do not in anyway mean to upset you and what I have said I hope will help not feel like a lecture

Riven that is just so hard on top of all the practical difficulties of caring for her.

I can only post a practical thing. Could you get a breathing monitor for her - the sensor one like babies use so you can sleep better? The alarms goes off if it doesn't detect breathing movement, I know the tend to go off in error lots of times but it may help you sleep?

I don't know, Riv. I don't know how you are supposed to cope with feeling like that.

I'm sorry that it's real for you.

Someone mentioned a forum - there must be other parents living with similar conditions, who might have advice - we can listen and some of us know what you are going through, but I imagine a dedicated forum would be a good thing as well.

riven, I was never in your situation but I lost my DD nearly 5 months ago. She was healthy and normal until she was almost 1 and then she suddenly became acutely ill, had 2 liver transplants, spent 3.5 months in hospital, had post-operative brain damage and severe seizures. I thought she would live, until a couple weeks before she died (when everyone was telling me she'd be fine) I kept myself awake all night every time I went to sleep I would imagine my phone ringing and think it was the hospital. Later, my phone really was ringing and it really was the hospital, and a few days later after a massive deterioration she died. I know how anxious you must be. I don't think you will ever get over it, or come to terms with it necessarily, but afterwards you will know, I'm sure, that you have cared for her and given her the best life that you could. I would say that my one real regret is not talking to DD before she died, in those last few days, I was stunned and in total disbelief, and in the presence of intensive care staff I couldn't vocalise my feelings but if I had her alive now just for one day I would read to her, cuddle her and tell her how much I love her. Maybe tell your DD every day how you feel about her, it may help you afterwards.
Also, in the meantime to help you get some sleep, are you able to get a breathing monitor that will alarm and will wake you if anything happens, then you could rest easier knowing if she isn't OK you will be woken up? Could restbite care be provided overnight sometimes for you to get some rest?

yes nancy. If we have one and her sats drop (seizure or not breathing) it would alarm and wake me instantly. I get very afraid of getting so tired I sleep through something bad. I cant bear the thought of dd passing away 'alone'. I do sleep next to her but want to hold her when the time comes.
Thank you for sharing that Demented. I get very anxious about not spending every possible second with dd even though I know its unrealistic when its been 5 years and I'm lucky to have had 5 years so far. When she was born they told me she wouldn't live the night and I made them wheel my bed down to NICU so I could be with her every second. Sometimes I have to take ds2 away because all the kids need a break and mummy time but I don't enjoy it because I'm too anxious about leaving dd.

I'm sounding like a crazy woman now aren't I

Oh Rive I don't know.
I put DS to bed, kiss him goodnight, switch his alarm on and pray that a status seizure doesn't take him during the night.
Did you ever have any luck with an alarm for DD?

Like you, I can't imagine a life without him, but in the early days when we were certain to lose him, we vowed that our life would go on and we would make it so much better for having had him in it.

Riven, I'm so sorry, don't really know what to say.

still no sign of the arm feelingbetter. Its being passed from GP to consulatnt and back again. For 6 blasted months.
How are you yourself?

Things OK at mo, ta. You coming back to TTR now, its back to yahoo and everything! Neuro happy with rufinamide at mo.

How's DD? Did you speak to her neuro after her bad night last week?
Come back to TTR x

yeah, he's talking rufinimde too but isn't happy her being on 3 meds. But we cant wean one till the rufinimide kicks in.
Might look for TTR if I can figure yahoo.

I counsel bereaved parents (when I'm not on maternity leave) and want to answer your question about 'after' just from what I have learned from my clients.

There is no one way to survive the loss of a child and most people's experience is different in some way.

The best advice I can give you is to acknowledge only what you are faced with in this moment. If there is desperate anguish at the moment, just try to let it be there in your body. If there is terror or rage, also just allow that feeling to sit in your body. Take the feelings as physical sensations happening now and literally breathe into them as you would with any terrible physical pain.

Don't try to think about, take in or accept the whole situation - or attempt to deal with the future - you can't because it isn't here yet. You can only do the part of the journey that you are in. Moment by moment turn towards what you are feeling at the time. Sometimes that will be excrutiating pain, but often you will find relief in simply acknowledging that fact and not adding to the pain by fighting it. Try to gently acknowledge the feelings you have without judging or escaping them. It will take enormous courage to do that sometimes, but I promise you that it will also bring you relief.

RL support from people who have a similar experience will be a lifeline to you if and when you seek it. Unfortunately, most people who haven't experienced that depth of loss will simply run away from your pain (and avoid you) and it can be difficult not to take that personally.

All of the parents I have worked with have eventually found comfort, often in unexpected places and at unexpected times. There will eventually be mornings when you don't wake up with the dread and agony you now feel. Those mornings will probably come without warning but will be completely invaluable to you. And you will discover resources of strength that will enable you to meet the days of unremitting pain.

I wish you and your daughter real peace and many moments of joy together and I am so sorry that you are going through this experience.

Riven, our dd2 is "life limited" too but not as imminent as yours. I also wake up in the night thinking that this time this is it, but so far it hasn't been.

I know that there is nothing that I can say or do that will really alter the outcome, and I owe it to our other children to try not to let dd2's life take over ours - and that is hard.

I have tried counselling, and it can work for some people, but doesn't for others. I'm now more of the fatalistic view that as I can't change it all, I just have to try to do my best each day.

its shit isn't it meltedmarsbar

Don't want to hijack this thread, so will leave you a thread in SN with info from neuro appt this week.

Hope you are OK x

When I saw you on another thread today I wanted to ask how your DD is doing after her hospital scare a few weeks ago.

Your posts about her are always so full of love and appreciation of her.

Would you be able to draw on support from your local hospice?

Riven - have lost 2 of my four sons.

My baby boy was 7 months old when he died. He had congenital heart defects. I asked over and over at the hospital could he die suddenly and they said they didnt know. Part of me wishes I had known just how short his life was going to be and part of me is glad that I didnt.

You will get 'through it' when 'it' happens my love...sometimes it feels like you wont, I remember thinking my head would explode and my heart would literally break in two.

Like other MNetters have said - those wonderful words 'I love you' mean the world, try to do as much fun and laughter as possible (you are more than allowed to have a private cry afterwards).

I feel like I am saying useless words because although I have 'kind of' been there I really dont know exactly how you are feeling. Take care, will send you my 'painted on smile' if you want it If you need to vent - [email protected]

"You are mourning the loss before it's actually happened. I think the same thing happens with the relatives of the terminally ill."

Can I just break in for a second to say that is true. Quite large parts of the last three weeks of my twin Caroline's life passed for me in a haze of mourning, anger, disbelief and helplessness.

I wish that I could have focussed 100% on her needs rather than mine. I am having my turn now.

thankyou for all your words and hugs to all who have already face what I will have too one day.
It isn't fair.

You are so pissing bloody right Riven - its the most un-fair thing I have ever experienced.

Riven - I think afterwards you draw comfort from how very much your life was enriched and enhanced by your dd having been born and how much you loved her. What I'm trying to say is that, possibly, you tolerate the grieving because you know that without the grieving your dd would never have been with you.

I have no experience. I can only speak as someone who faced the possibility of my first child dying during labour. I only really had seconds to formulate cogent thoughts as I was knocked out for c/section but the overwhelming feeling was that I hoped she'd live, even if only for a minute, because that would mean so very very much to me.

Your dd's sadly inevitable death is a part of her unique life. I have tears rolling down. So sorry. xx.

Riven, sometimes its shit but its also given us a very rich and full life - we have made such efforts to do more as a family than we would otherwise have done. The drugs and the personal care and the side effects of the condition are sometimes wearing and awful, but she is a happy funny little girl and we all love her and will be devastated when it happens.

Actually I think so will many of our friends. You make some very close friends when you have such personal stuff to deal with. They have helped me enormously. In fact we have a "carers and helpers" party at the end of each summer, (did it bank hol monday) they all bring their kids and we have a party, and the adults have beer and wine and the kids have a sweetie treasure hunt in the garden.

i have no idea what to say but couldn't pass by without saying something.

The Dash

I know this poem is for an adult BUT our precious children still have a 'dash.'xxxx

Riven, I just wanted to add that your posts about DD have changed the way many of us think about children whose lives are limited, and challenged our ideas about how their parents 'must feel'. Thankyou for that.