Mumsnet Talk

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 just need to know an acceptance comes before I go crazy greiving before its happenend. Which is wasting her life. I know I will hate it afterwards if I didn't enjoy every minute

Oh Riven, I don't know what to say.

I have no answers to your question Riven, but just wanted to post to say that I am so terribly sorry for you and your family that you are going through this.

I have been wondering this too as my cousin has been told her baby will only make it for a year or two.

I guess you just have to live in the moment and take each day, hour, minute as they come. There's no point worrying about the fact it will happen. It will happen and at that point you will have to deal with it but now each moment is precious and all you can do is make life as positive and enjoyable as it can be for the both of you.

I'm so sorry.

Riven don't know what to say.

Would it help to talk to parents in a similar position? I wonder if there's a support group or if, say, Winston's Wish would be able to put you in touch with someone going through something similar.

God Riven I'm so, so, sorry.

Riven
So so sorry

Riven, that is awful......... to have such a perpetually heightened level of stress. And it's not as though you can take a deep breath and decide to exhale. Dreadful. I don't know what to say.

my friend went through this, her little girl had batons decease.

i have absolutely no idea how anyone in this shitty shitty situation deals with it, im so sorry riven.

I saw the title and immediately thought of you but didn't think it would be your thread.

No way is it the same but I have a fear one of my children will die and I will regret not enjoying them more. Just because we know we will feel like that doesn't change how we feel right now.

You know you have to get some sleep, don't you?

Right away I will offer to come and sit for you so you can sleep and I will watch your DD.

Have you got anyone who could help?

Do you get respite?

What do you need?

I don't think you can live knowing your child will die. I think you have to block it out to a degree and just get on with things right now as best you can without thinking about tomorrow.

I remember when you had your panic that DD had died and just want to hug you.

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

How awful for you Riven

riven i am so sorry you have to live with this everyday

lots of love to you and your family and especially your little girl

xxxxxx

I don't know

The not breating thing is scary. My DD struggles with it sometimes too. Every twitch in the house at night has me bolt upright. Her waking me up in the morning annoys me for breaking my sleep - but I am so glad she does. When she is bad Dh stays up and I get up early so he can go to sleep.

I tell her I love her a lot so she knows.

Don't be harsh on yourself - a good life is not always a long life.

This might be a bit insensitive, but I also need to know what happens 'after'?
I do sleep when she is at school, hence wishing the summer holidays would end! We had a couple o hours of respite most days but I have to stay with them as most are young girls with very little clue.
Most of the time I don't think about it but the anxiety has been growing since we were told. DH just says 'whats the point of worrying until it happens' but I am a worrier and worry about everything! The GP did give me some valium to help with the anxiety but it rears up from time to time.

There's never an acceptance, Riven, never.

My story is that one of my twins, Ciaran was diagnosed in utero as having a condition which meant he was unlikely to survive much after birth, if he wasn't stillborn, he would need a kidney transplant within the first year, and he would be unlikely to survive to that.

The first few weeks after being told passed in an angry haze of denial, feelings of it not being fair, and the whole 'why me' thing.

Then i decided that i was using up valuable time that i could be cramming with memories instead. So i took myself to the beach when the sun shone, and bared my bump to the sun aas i'd read that unborn babies can feel outside tempretures, and then again when it was stormy so that he could hear the waves crashing into the rocks below.

I'll never stop loving him, he's my firstborn baby boy, but he had his life before he was born. In this life, i got to tell him how much he'd changed my life, how much i loved him as i bathed him in my tears. He died after an hour and 42 min, snuggled into his daddy's arms.

I guess what i'm trying to say Riven, is that although my case is totally different to yours, you have to do the best you an at the time.

Can you talk to whoever is in charge and request you are sent carers who are actually of use?

Your DH is right but I am a worrier too so can see both sides.

What is it you want to know about after - the formalities or the emotional side?

I suppose when you look at people who lose a child or partner, they do survive, even if they don't know how. You will keep going and your other children will help you.

Oh Riven I'm so sorry.

Deemented that's so lovely.

Deemented for you but [happy] you were able to make such lovely memories.

riven, i've noticed on another thread that you dont have a sats monitor - is this the thing that monitors oxygen levels in the blood?

I am so sorry that you're going through this. I can't imagine how anyone copes or deals with it .

I lost my Dad to cancer 12 years ago but while he was ill it was so scary to think that I might come home from school and he would be gone.

I'm so sorry that I have no advice. Just wanted to say how sorry I am.

Oh Riven. I have no idea how you cope. No idea.

Can you have some counselling? I think you need to speak to a professional to let it all out. You are and will go through so many different emotions. It must be like a rollercoaster and so exhausting.