Walking together on a journey - sharing experiences, tears, anger and sometimes even laughter. United we stand, divided we fall.

(973 Posts)

This special thread was started in 2008. Its a special place - one which nobody would ever willingly come to. I hope we pay tribute to our lost children by helping each other. xxxx

My lovely niece lost her 8 year old daughter while we were on holiday. sad Beth was born with Wolf Hirshorns syndrome...she was severly disabled. My niece is obviously in bits - she has cared for Beth since she was born and has nursed her daily like only a Mummy could.

Beths funeral is on Monday. Talked to my niece yesterday and she is so upset at the involvement of the police - she said she feels sure, after being interviewed by them for hours, that she must have killed her sad I told her about our experience after we lost Gareth and it seemed to help her.

She said 'its so weird Auntie Shabbs.....just so weird....no other word describes it.' xx

Shabba, how desperately sad about Beth. Weird is a good word to describe this new, nightmarish world your niece is in. I hope it wasn't too difficult for you to share your experience with Gareth - but even it was, I suspect you would have done it anyway, with your pinned-on brave face. X

To be honest I am dreading tomorrow when its Beths funeral. Everybody is going to wear at least one piece of clothing that is pink (Beths favourite colour) and afterwards they are going to a local social club and having a karaoke and disco (Beths favourite 'thing')

I was, for once, pleased that I could give her advice based on my own experiences. She said she feels lost without all the medical care she gave her little girl and keeps thinking she has to give her medication etc etc. Poor, poor girl. Have already said that I will go to the inquest with her if she wants me to...its set for December 9th this year which will be my 57th birthday sad

I have that horrible uneasy feeling in my body and dont know about anything anymore - if that makes any sense. Last night I felt like I couldnt breath through my nose and had to put the edge of my finger in my mouth to fall asleep because I kept thinking I couldnt breathe through my mouth either.

Its truly a 'weird' World!!!

.......and I only 'realised' today that my lovely, lovely SIL is Beths Grandma....I know that sounds crazy but I just had a panic type moment when I thought 'Oh my God, how is SIL feeling, losing her precious Granddaughter. I truly think I am losing my marbles, but will pin on my smile tomorrow and do the best I can to support my family xx

lavandes Mon 12-Aug-13 07:51:50

Morning ladies x

I am so sorry Shabs I will be thinking of you and your family today, I am so sure that you will be able to give your niece your special support, keep breathing as you tell us. Life is so cruel xxx

Morning girls xx

Overslept this morning and woke up to Lew ringing me from outside! Its 13 degrees here - last Monday when I woke up it was 43 degrees in Greece..........I am freezing!!

Thank you Lavandes - life is indeed cruel. xx

Precious child

Oh my word....just got back from Beths funeral - I was holding it together until this song was played. An amazing pink Princess coffin - her brothers and sisters wrote their thoughts about her. My Niece (her Mummy) stood rocking as the hearse came down the road...clinging to me and stifling her crying. My SIL who couldnt look at me for a long time and then said 'How the hell did you do THIS twice?' A touching, heartbreaking, funny, sad day - and now their walk down this crappy road of bereavement begins. xxx

frasersmummy Mon 12-Aug-13 20:03:24

aww shabs today must have been soo soo hard for you today

Sounds like you are coping really well even though your heart must be breaking

have a glass of something alcoholic and here's a hug

Morning girls xx

Shabba I'm so sorry to hear about Beth. I can empathise with her mum, losing your role as carer as well as mum was so hard for me, and other parents at the hospice group we attend. It feels like you have all these skills that you never chose to acquire, but would never resent having, then all of a sudden they are obsolete. I sat around for a long time missing the hum of the oxygen concentrator, and the Sats alarm, and the beep of the feeding pump, and the regular medicines that needed to be administered, the therapy sessions, nurse visits, hospital appointments, feeding tubes, monitor wires. But above all, the cuddles. Beatrice couldn't move, so she couldn't get away from me even if she wanted to wink so she was smothered in kisses in cuddles all the day long, I hated putting her down.

I miss every little thing about her and I'm going through a low patch. I think of her ALL THE TIME. And I'm crying at night again. I sleep with one of her dresses under my pillow and I often wake with it under my cheek, so I've soaked it in tears too many times.

We went on holiday and I felt so low, wishing we were the family of 5 we should be. I'm nervous about her birthday coming up next month as I know my family won't acknowledge it. All in all, if you met me in the street you might think I was a normal mum of two coping nicely with life, but underneath it all I am crumbling without my darling, darling girl. It hurts so much.

Morning girls xx

Cupof - that was the first thing I said to my Niece....'I can imagine that you feel you have no routine left.' She agreed that she keeps waking up and the house is too quiet - no monitors, no medical equipment.

The worst thing of all is that they live in an adapted (for Beth) council house. Its a lovely house....but within the next month they will have to leave it because thats our local councils policy! I am sure they will be given help to find a new house but that will be so unnerving for all of them. Their (mini bus) adapted car will have to be given back to the DLA people etc etc etc. Too many changes all at once. My God I wish I could help them but I dont have the money to do it. Yes I know they are material things but they must be obviously greiving and all these changes will make 'stuff' so much more difficult sad

Everybody OK??

lavandes Fri 16-Aug-13 07:39:05

Morning ladies x

Husband has not been sleeping so he woke me up at 3.00am to ask me where the Nytol are!! bit angry not been to sleep since.

Morning Lavandes - that sounds like something that would happen in our house hmm xx

Thinking of chip today. Sylvie-Rose's birthday. Xx

shabba that loss of routine, that purpose of each day gone, the weight of loving responsibility taken away... Your poor niece. Please her know that there are others out here thinking of her and little Beth. Xx

snorris Fri 16-Aug-13 08:41:13

I'm still lurking around. Having a bit of a wobble atm. Dd1 got her results yesterday and is off to uni in just 4 weeks. I am going to miss her - I haven't told her yet I will probably embarrass her by crying when I drop her off wink .

Sorry to hear of your great niece, Shabs and thinking of chip today.

Oh Snorris 'wobbles' are totally allowed - I still have wobbles on a daily basis. I can only imagine how much you will miss your daughter as she starts the next phase of her life at Uni.

Thinking about you today Chips - later today (when Lew goes home) I will light my candle in honour of your DD xx

I will certainly pass on your thoughts to my Niece Mias - and thank you. She and the family have gone on a few days holiday together. She messaged me last night and said did I think it was her fault. sad We talked long into the night and she seemed a little more settled when we said goodnight. xx

Morning girls xx

WeAreSeven Sat 17-Aug-13 16:49:21

Thanks for the kind thoughts, all xx ( It#s chip, by the way!)

Yesterday was so tough.
A colleague who has become a good friend buried her lovely Dad yesterday. I went to the funeral.
Came home, did Sylvie-Rose's cake and balloons and then got a call from my Mum to say that her friend's first anniversary Mass was yesterday evening as well! Her friend was also the mother of my good friends and I lived there for a year so did want to go but the timing!
I went anyhow.

God won't know what hit him with me going to Mass twice in one day! He must be in shock!

But I feel that it wasn't just Sylvie-Rose's day with all else that went on!

That sounds like a very tough day love.

Lit my candle early in the afternoon for your DD - Lewis was still here and sang 'Happy Birthday' to her smile He said 'Its weird Andma that you have never met these ladies really but you all talk about your children....its weird but I think its very nice!!' The truth out of a 5 year olds mouth. xx

WeAreSeven Sat 17-Aug-13 18:57:13

Aw, bless Lewis!

I am glad I went to C's anniversary Mass. Her daughter told me something which I found comforting.
When C died, the clock in her house stopped at the hour she died. It never worked again and her daughter who lives in the house now got a new clock.
When they were getting the house ready, C's daughter felt C in the house.. and then the new clock stopped at the same time the old clock had.
I hope C is helping to look after Sylvie-Rose. She was a lovely Mum and granny.

Morning girls xx

WeAreSeven Mon 19-Aug-13 22:27:23

Evening, folks!

Morning girlsxx

Looks like its going to be another grey day here in Lancashire....really homesick for the hot sunshine of Greece.

snorris Tue 20-Aug-13 07:19:21

Morning. Just to make you jealous we have sunshine down here in the South! grin
My Grandma's from Lancashire - I vaguely remember going to visit my Granny in Rochdale when I was little. A random bit of trivia there! wink

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