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

Hi Riven,
I have just come across all this and hope you are keeping it together. You have got me feeling guilty, hoping the post I made on the sn board hasn't triggered this.
www.mumsnet.com/Talk?topicid=special_needs&threadid=794334-My-biggest-fear
It is a major worry loosing your child, it's something I worry about a lot. You have had lots of kind words, comfort and support. I have to admit it's something I couldn't help with as I can't help myself either. So I am sorry if this all sounds harsh. I try to live for the day although that's not good either as there are no future plans. Kind of put it to the back of my head. Sorry not doing this too well. Take care xx

riven cat me or email me on [email protected] know my dd condtion , not same as yours but i do know how it feels to know that you will outlive your child and it hurts like nothing else does

.I know chances of dd making even her teens are slim but take just one day at a time it is all you can do it

I've just seen this and read every post in tears, but wanted to read it all so that I could post my own message. Its a horrible situation and I feel for you so much.
Of course its not the same thing, but my mum was diagnosed with Alpha1 Antitripsin Disorder when I was 10 (I'm now 24). For 14 years we became used to mum going into hospital in the Winter due to getting bronchitus (sp?), infections and other similar problems. Over the years mums breathing got worse and worse and last year she became very ill, ending up in hospital 3 times, including over Christmas with two collapsed lungs. She was placed on the transplant list in Feb and on Mothers Day this year she received 2 new lungs. She will finally be coming home from hospital next week.
While we are emmensely grateful for the donated lungs, it hasnt been plane sailing and 3 times she ended up back on ICU with severe infections. I believe that in addition to the skills of the Harefield Hospital who are caring for her, she has been very lucky to have survived this. And while we know things have improved for mums quality of life, it doesnt change that feeling that death is hanging over her shoulder.

I feel a bit bad about posting this; losing a mum is nothing like losing a child; we all expect our parents to die someday in the future before us; we expect our children to out live us. I just wanted to say I know the feeling of worrying every minute that you will lose them.
From the posts I've read, you sound like you are doing the best you can possible do for your DD. Sometimes people have a tendancy to treat a terminally ill person as though they are already dead, but it doesnt sound like you are doing that.

All I can really advise is that when you have no-one to turn to who will let you vocalise your very real fears and worries you have the board to turn to. I think it can act as a sort of buffer with regards to difficult subjects and so it is a little easier to discuss hard subjects.
But you knew that already; how great the board is. I just couldnt not say anything on this thread.

You sound like a very brave woman and I think your DD is lucky to have you.

Riven, I don't know you well and you don't know me. I haven't had to go through the terrible things that others on this thread have faced. I've read a lot of your posts, though, and it is abundantly hugely clear that you love your darling daughter to bits and that she loves you. This is all any of us want, really, to love and be loved. So sorry that your time with your lovely daughter is to be cut short. But she has had the best of everything in having someone who loves her so much to take care of her while she is with you. Sorry if any of this is crass or inappropriate or whatever. Like I say, I have no personal experience of your situation so I hope I haven't offended.

I'm quite new to this site and have only just had a peek into this section, I notice you haven't posted for a while and wondered if you are ok?

I lived a similar existence to your life for two and a half years when my daughter suffered oxygen deprivation at birth (proven medical negligence). She ended up profoundly disabled (CP) and we knew from day 1 that she could die at any time. Bless her, she struggled on for a couple of years but every morning I woke up and wondered if she was still alive. And like you I was up most of the night anyway, checking, tending, crying.. it was and I know for you is, exhausting.

All I can say to you, is to continue as you are. Take one day at a time, be kind to yourself and take all the support you are given. The grieving process has started and it is a long and lonely journey but one day your sun will shine again. My DD died in 2002. It hasn't been easy but now I can look back with pride at how brave and beauriful my DD was and frankly how well I coped. We do, we have to, we are their Mums.

I don't know if you have a husband or partner but one lesson I had to learn was to allow the other to grieve in their own time, in their own way - BUT keep the dialogue with each other open. Its too easy to drift apart in your grief and sometimes very hard to find your way back to each other again. I speak from experience on that one.

I hope you are ok. I hope your DD is well.
Be strong x

Hi Riven
So desperately sorry for what you are going through. I wish I could give you advice in this agonising time. I had 3 hours to come to terms with the fact hat my daughter would die. The shock of the situation made me go numb. Everyone kept telling me to have hope but I knew in my heart she was already gone but the wires and monitors were sustaining her artificially. I suppose I was 'lucky' I didn't have to deal with what you are faced with with every waking minute. But I am left not knowing what my daughter would have been like or had the chance to love her deeply. Take comfort that you have loved your child and that those memories will never leave you - neither will the pain or unending emptiness. I wish I could give you comfort but I have no comfort myself. I wish you and your child peace in te days ahead. Sorry for the depressing post. Just had a miscarriage and so I am feeling utterly shit but nothing compared to what you are are. xx

Riven am thinking of you, didn't know you had had this dreadful news. Can't offer much in the way of experience or support but only thoughts and prayers. Hope you and she are doing ok at the moment x

Riven - I just reread my post. When I wrote "I suppose I was 'lucky' I didn't have to deal with what you are faced with with every waking minute", I meant you knowing that she does not have long to live rather than the difficulty of her illness. Regardless of her illness, she is your daughter and as you wrote in earlier post, a differnt path would not have led you to her.

I dont really know anything i can say, that would be any help at all, but I know there are beathing alarms you can buy that go off if a kid stops breathing, could you get one? then maybe you could atleast sleep, knowing you'd be woken if she did stop beathing. (I could be very wrong in that suggestion, but thought i would mention it)