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

Riven I wanted to post but at the same time haven't wanted this to be on 'Threads Im On'. It is such an unbelievably intolerable thing to imagine that my first instinct is to hide.

My cousin had a similar problem and we were expecting her to have a seizure that would end her life. We were encouraged to think of it as her life being completed, rather than robbed or cut short. I was torn up both by the loss and also by the guilt I felt for being relieved. I never wanted her to go, but sometimes, given that it was going to happen, I wanted it to hurry up because living with the 'threat' was extremely painful.

I am so so sorry, but your daughters life does sound extremely enriched as I'm sure yours is from having her. Try not to be frightened. Her life will be complete before yours but it does not make it any less of a life.

Forgot to add, that she will never herself experience the pain of losing a loved one.

Thanks for all the kinds words. Yes, she has been offered 14 nights a year at the local hospice. Unfortunately they are so stretched that only 3 nights are avaialble in October. But that will be a break - I'll be going with her of course (Children Hospice south west if anyone has some spare millions). They will also have her 'after' or should she actually get poorly but its more likely to be sudden with dd. Its a great place, I just wish there were more of them because there are many many families like ours, many with children worse than dd

'Riven i have been on several style and beauty topics with you in the last few days and i would just like to make a personal apology to you if i offended you in anyway going on about stupid Boden and fleeces'
Don't be silly Boden lady. I enjoy fluff and trivia too which is why I join in on other threads. Course, still don't see why you hate fleeces

I'm so sorry that you have to face this Riven.

I can understand a tiny bit of how you feel. At 4 months we were told that it was unlikely that dd would survive her first year. I think I sleepwalked through those 8 months and clearly remember the sick feeling in the pit of my stomach every morning. I still get it now occasionally. For us things improved and the threat was lifted. She won't see old age but she'll do OK I'm sorry that you'll never hear those words.

This may sound a bit morbid to other people but it helped me so I'll suggest it. Have you made any decisions about after? Her funeral? I made some plans, music, poems, that sort of thing - it helped because I could sort of put it to one side then, and it was something I had control of. I needed that. Obviously it might be something you don't want to think about. There's no rights and wrongs to how you get through.

Have a good day with dd today and look after yourself too.

I have thought about her funeral a few times. There's a poem called 'the gift' but I cant find it and one where the theme is that death is like a ship leaving your shores but it appears on another shore.
I don't want MIL to come or her older sister. dd1 hasn't had anything to do with dd for 3 years and dd2 doesn't even know she has a sister. And MIL has a widely known opinion on disabled people. Is that mean?

Our neighbours lost their 5 year old son very suddenly and unexpectedly two years ago. My neighbour has said to me that she just gets through the day by just getting through it, IYSWIM. Her other children mean she has to get up in the morning, life happens in the meantime and before she knows it another day has gone.
The pain and sadness for her boy are always there but accepting that's the way it is makes it easier in a way. Sometimes she gets blindsided by something which brings the pain into sharp focus and there are other situations which she knows will be hard - family celebrations where he's not there. She just faces it head on, "gives in" to the emotion rather than fights it and eventually the end of the day comes.
Try to sleep, Riven. I wish you and your family peace.

We have several in our 'group' who have lost their children. I've been to all the funerals. Some of the women still come when we do our infrequent get-together-for-lunch but some have withdrawn completely.
We talk about the kids too, especially when it comes to asking for advice about aspects of disability.

I don't know what it's like, but my gut feeling would be don't get ahead of yourself. You'll have enough time do deal with the reality of her being gone once it's happened.

I think Trinity's thread about her DH riding his bicycle with no hands and showing off to their DD is really going to comfort her in years to come. It's such a sweet, trivial little thread - unutterably awful that three or four days after she wrote it, he was dead, but that golden little moment is preserved forever.

Write, take photos, blog, take videos and enjoy every single second you have with her.

i'm so sorry you have to go through this...i can't imagine how difficult it must be.

i guess that it just has to be "live for the moment" do things that you both like..create memories, go to beautiful places, spend time together doing that your dd enjoys.

thinking of you all. x

Is this the gift poem?

www.jessieevans-dongray.com/essays/poem006.html

Im glad youve been offered some respite at the hospice. its so sad there isnt more funding for these places it really is.

Have you asked them about counselling if that was something you thought might help? I know at our hospice they were always happy to chat to parents if they could help in any way as well as providing more 'formal' counselling.

is it this one riven

i raise money for a childrens hospice and i know how much they need funds.For eight weeks we visited my friend whilst she stayed with their son ,the staff were so warm and welcoming,and it was believe it or not a very happy place to be.When their son died,they were on hand to help everyone through it,and were still on hand to the parents even to this day which is now 6 yrs later.Riven i can tell you what happened if you really want to hear it,but i dont want to upset you anymore than what you are now.And neither do i want to put it on here .My email is lingord dot eaton at ntlworld dot com

Very sorry. Please continue to find time and energy to hug and enjoy her.

To some extent the same is true for all of our lives but you have that possibility/probability hanging over you . I don't know what to say.....reminder for the rest of us not to waste time feeling sad about small inconveniences/challenges that we face....

Oh Riven I cannot even begin to imagine how you are feeling

So so sorry you are going through this

And deemented your post, so poignant...

I have never responded to a thread like this because I have no idea how I would feel and think whatever I say will be useless. I am so so sorry. My dd has a very minor disabilty (microtia- one ear missing) and said to me on friday 'when am I getting an ear like the other children?' This made me cry and feel incredibly sorry for myself, for her, for all of us, but it seems so irrelevant now. I cannot offer any brilliant words, just thoughts to you.

wrong poem title
Its 'The call' and the theme is that dying is like hearing a call (not religious themed though)

Is it the Regina Spektor song, Riven?

nope

Riven Im so sorry .

A boy at my sons school was killed in a tragic road accident,I have since spoken at length with his Mum and this was something we discussed that knowing your dc was going to die would be a far harder thing to live with,every kiss being the last kiss every day being the last in effect a living death.

I think as other people have wisely said you have to make the most of every day, not to live in a 'love bubble'but to enjoy your dd for all her quirks good and bad and build as many memories as you can.

I really am vv sorry xx

I'm in a similarish position. DC has so many serious health probs as a result of chromosomal abnormalities

I deal with it in a mixture of ways. I try and revel in the greyness / uncertainty of it all. I remind myself that no one has a crystal ball.. I understand that my dc isn't going to get better but they still have a life worth living and that every moment is precious. I remind myself of other bereavements in my life - young, healthy people where death came completely out of the blue. We're all going to die. My dc will be younger than lots who do but again, I can't really know when that will be. Its not as though my dc has a clear cut disease and prognosis. My dc could live well into their teens or even beyond. They may not. Some days it feels so unlikely dc will see the year out. Usually that is a bad day - some hospital emergency or drama

I try and do something 'nice' everyday - quite hard cos we are in hospital a lot. Try and have days out as a family - getting on with regular, normal stuff. I take lots and lots of photos and video

I try and deal with the anxiety as a seperate thing (my friend pronouces anxiety as anxshitty - v apt!) I've /we've (dh and I as a couple) had various counselling. I talk to people - a couple of people I really trust. I write. Regarding fears and anxiety over something actually happening to my dc - that is more tricky cos those concerns are very real threat. I've had to fight to get more support (haven't we all?) We have a nurse come in overnight which has helped a lot

I'm v busy. I find the more I take on the less time I have for dwelling on stuff. I like having other things to focus on. I try and go out with friends / dh and keep some semblence / continuity with what my life was like before dc was born. Often seems v trite and like I am forcing myself / going through the motions at times.

Most of our family and friends have no idea how serious things are with my dc. My parents kind of do but seem very much in denial. Maybe people sort of understand but don't let on. I don't know. But I find this a help in that for the most part, it doesn't seem like being in some sort of limbo between life and death

I am a regularish poster on mn - not trying to be all mysterious but just prefer to not draw attention to all of this for reasons above. Am sorry you are struggling so much right now riven. I'll message you on fb. Am here if you want to talk

I'm so sorry to hear this Riven. I too saw you mention it in another thread and I didn't know what to say. I still don't. I can't begin to imagine how you live with this.

I'm another person who has learned much from your posts. You and DD are in my thoughts and prayers.

thanks diddy. I am trying to keep busy. Going to volunteer for the CAB as a route into paid work and make a life that isn't hospitals and SN.
Family don't get it either. In-laws don't care and my mum is in denial. My brother, who has seen dd once announced the doctos were wrong and why did she need a feeding tube. But then he doesn't understand why we don't all fly to Australia to visit.

I think this might be it Riven.

---

A ship sails and I stand watching till she fades on the horizon and someone at my side says She is gone.

Gone where? Gone from my sight, that is all. She is just as large now as when I last saw her. Her diminished size and total loss from my sight is in me, not in her.

And just at that moment, when someone at my side says she is gone, there are others who are watching her coming over their horizon and other voices take up a glad shout - There she comes!

That is what dying is. An horizon and just the limit of our sight.

---

I found it here with the original poem it is based on. They also suggest a Tennyson poem 'Crossing the Bar' which has the same notion in it.

The CAB plan sounds a very positive one. Do please be careful though, going in to an area which involves giving more of your generous self, to keep back enough energy to deal with the emotions people have described so powerfully here.

Riven

I'm so sorry for your wee one and what you are all going through. Sometimes life sucks and there is no reasoning to it.

I lost a adult friend a few years ago and did my best to support her mum through her illness and afterwards. I did a lot of mental bargaining, but in the end you cannot change what is happening. You can just brighten a moment with a laugh or a have a special day. My memories from her illness are some of my most precious and I gained a huge amount from knowing her.

As others have said, the thing that got me through the hardest times, was the knowledge that all things change. For better, for worse, whether we like it or not, time marches on. Even in those moments which seem too much, just hold on and breath through them, because all things pass. You will never, ever forget, but in time you will remember the good times more than the bad.

I also read a novel which touched me greatly: I know this much is true by Wally Lamb. Be warned, it's fairly heavy going with some deaths, including a SIDS death. So it may be one for some point in the future.

Good luck to you and your loved ones.

Joolz

thanks redlentil. Thats it.