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Original poster

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

136 replies

TheDMshouldbeRivened · 05/09/2009 16:55

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

OP posts:
Original poster
TheDMshouldbeRivened · 05/09/2009 18:16

when dd was about a year old I met a couple at a camp whose son had been born in the same week. He suffered a lack of oxygen but sadly died after 4 days. It was like seeing the 'other' path. We were both greiving for the baby we 'should' have had but didn't but I didn't have an empty cradle.
A year later i bumped into them again and they had a new baby. They looked radiant and happy. I looked exhasuted and haggard.
There are times when I wonder what things would have been like if she'd gone at birth. I'd of had another baby. I wouldn't be a carer or facing this now.
But it wouldn't be her
It was very confusing seeing the 'other' path.

OP posts:
shabbapinkfrog · 05/09/2009 18:18

I know what you mean Riven - I struggle when I see someone with healthy twins - I get very envious

I am now meeting up with Matts (my son was killed by a reversing lorry in 1992 just before he was 8 years old) school friends who are now becoming parents themselves. I am always overjoyed to see them and they still talk about Matt but, again, I am envious xx

Sending love and thoughts from Lancashire xx

Original poster
TheDMshouldbeRivened · 05/09/2009 18:19

off to sort dd's dinner out and her meds n tube then heave her into bed (me too)
She was sat on me as some clapping on the TV made her cry. Everytime I asked her if she was feeling better and could go back on daddy she made a tiny pathetic 'no' sound but I could see her smiling

OP posts:
FabBakerGirlIsBack · 05/09/2009 18:20

I understand that a tiny bit Riven.

My son had a twin who I m/c. I sometimes think if I hadn't conceived when I did I might have been expecting just the one child so would never have to deal with the loss, and neither would DS2, but then I wouldn't have DS2.

But I guess I wouldn't know any different either..

Original poster
TheDMshouldbeRivened · 05/09/2009 18:21

hugs Shabba. So very sorry about your son. I have a friend whose 17 yo was killed a few weeks ago by a car. I've sent her emails but she has withdrawn from everyone. Not sure what to do?
What did you wish people had done?

OP posts:
wigglybeezer · 05/09/2009 18:25

I don't know how you cope, i can only say that my Granny lost a child through meningitis (and her 19 year old killed in the war) and DH's Gran lost a four year old to a brain tumour.
They never forgot their lost children (and were very sad around anniversaries etc.)but lived to great ages taking much pleasure in life and their remaining children and grandchildren etc. They both had that "don't sweat the small stuff" attitude which was much appreciated by their grandchildren.

shabbapinkfrog · 05/09/2009 18:27

The only thing that helped me was knowing that people were always there for me...I eventually had to say to people 'could you do a bit of shopping for me' etc etc. Everybody I asked to help did so with love and patience.

She will need you in the years to come. I couldn't get the image out of my mind of the accident with Matt - I still cant watch things like Casualty on tv - its too close to home. She will be re-living everything over and over again.

Just be the friend you sound like you always have been to her. xxx

kormachameleon · 05/09/2009 18:33

This reply has been deleted

Message withdrawn at poster's request.

SpawnChorus · 05/09/2009 18:38

Oh Christ Riven. I don't have any answers, but just wanted you to know that my heart aches for you and any other parents living under this terrible shadow.

ilovesprouts · 05/09/2009 18:42

so sad for you riven xx thinking of you

waitingforbedtime · 05/09/2009 18:45

Riven, Im sorry to hear about your daughter. I dont know you but do you have any contact with yoru local children's hospice? They would be able to put you in touch with someone you can talk to aswell as other parents who are sadly, in a similar position at one stage of the journey or another.

I apologise if you already are in contact with the local kids hospice as you will know all too much about it but I used to work for a kids hospice and sometimes parents were scared to come at first, to 'admit' that they needed help from a hospice. People often associate a hospice with being a sad place and whilst, of course, that was sometimes true in general it was very uplifting place to be and I know alot of parents, life limited children and siblings gained a lot from their relationship with the hospice be that through on site respite care, having someone to talk to at 3am when youre worn out and scared, outreach respite care or bereavement care.

I once again apologise because I realise you probably know much more about all this than me but just on the off chance that you werent sure about hospices I thought Id post.

madameDefarge · 05/09/2009 18:48

Just hey, Riven. others have more useful stuff to say. You are being the best mother possible to her, know that.

mummylin2495 · 05/09/2009 19:02

Riven ,i am so sorry to hear this awful news.My friend whose son was diagnosed with a terminal brain tumour built up lots of memories before the time came ,one of the things she did was to have each parent and each child including the son who was ill ,make a hand cast.It is a lovely memory for the parents and all the hands are on the sameboard which they then had framed.I have read often of your dd and your love for her shines like a beacon.I am so sorry you are going through this.

bodenites · 05/09/2009 19:15

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 etc my neice died when she was 12 in 1982 and i have thought of her every day since then i have also lost my mum dad one of my brothers numerous aunties etc so have expereienced loss i also have an autistic son my biggest worry about him is what happens to him when WE die its all shite isnt it? we just have to get on with it as best we can and i agree with the person who said i love you isso very important to say sorry rambling..hugs to you and all your family xxxxx

Lilyloo · 05/09/2009 19:27

Riven i saw this news in one of your posts a few days ago and i am so sorry.
I guess it takes time to come to terms with it and still now disbelief that the day will ever come.
Living under the shadow of terminal illness is very very hard for everyone concerned. There is no 'time out' or a stop button on the rollercoaster.
A day at a time is all you can do trying to deal with your feelings when they arrise.
You sound a wonderful mother and your dd sounds like a truly lovely little girl.

bibbitybobbityhat · 05/09/2009 19:33

Hope you all get some sleep tonight Riven x

GardenersDelight · 05/09/2009 20:10

Hi I'm sorry to hear about your DD, I'm a nurse at a childrens hospice do you have one near you that can help? We offer respite in the hospice or at home, family support which continues after a child has died. I could get you more info if this would be any use?

Stayingsunnygirl · 05/09/2009 20:15

As some others have said, I don't know what to say to you, Riven, but I want you to know that I've read this and I will be thinking of you and your dd each day from now on.

I have read a number of your posts about you and your dd, and you are an amazing woman whose love for her dd sticks out miles. When the end does come, I hope you will be able to take some comfort in knowing that you gave her the best, richest and most love-filled life that you possibly could have done.

I don't know where you live, but if there is anything at all that I can do, then please ask.

ohmeohmy · 05/09/2009 21:06

my thoughts are with you. try to take care of yourself for her sake and yours. Love will see her through and you too. You sound like a truly amazing woman.

may sound like hocus pocus but perhaps a hypnotherapist or emotional freedom technique might help with anxiety and stress here

onlyjoking9329 · 05/09/2009 22:39

words are hard to find but know that i am thinking of you.

GoldenSnitch · 05/09/2009 23:00

Oh Riven

Thinking of you

sweetkitty · 05/09/2009 23:00

Riven I have no words of comfort or anything practical to say to you but since I have "known" you on MN you have opened my eyes to children with SN and how much you have to fight every day for them and how much you devote yourself to them. Your love for your DD shines out in every post, she is a wonderful gorgeous little girl and I love seeing new photos of her on FB. Much love and non MN hugs to you both.

MrsDanversWorksForTheDM · 05/09/2009 23:18

So so sorry to hear of what you are going through Riven

We had to brace ourselves that DS might die during open-heart surgery.The docs sort of tried to prepare us. Not that that's anywhere near what you are enduring but I remember thinking how bloody trivial and petty, what other people considered to be 'problems'

I couldn't read or watch anything unless it was about real life or death issues. It all just seemed irrelevant. As Bodenites said there we all are talking about bloody clothes, it must seem pathetic to you, and you are right.

Sorry for waffling, your post stirred up some old emotions. You and your DD are in my prayers.

plonker · 05/09/2009 23:56

Oh Riven I just don't know

I have read many of your posts and I think you are a fantastic mum to all of your children. You are such a credit to your beautiful daughter, and she is without doubt a credit to you.

You are in my thoughts and prayers.

Heated · 06/09/2009 00:02

Oh Riven, you made me cry. Your love for your dd shines so strongly.

When I was a child nursing my terminally ill mother, all the while I was raging at God in my head not to let her die. And I was so afraid she would die before I got home from school or during the night. In the last 12 hours before she died though, I actually prayed to God to let her die, she deserved to be a peace. And after it was over I was grateful. Seems odd maybe to feel that.

But they are true words from Bamboo, "you are mourning the loss before it's actually happened. I think the same thing happens with the relatives of the terminally ill," - I think that's what you are doing Riven.

And afterwards it's still such a shock even though you've anticipated it all this while; but you cope somehow because that's what they would want for you - it's a sense of not letting them down - and because other people need you too.

And coming full circle to the start, but knowing your dd knows she is loved - by everything you do for her and say to her - means so much and is a tremendous source of comfort.

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