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Original poster

As we go through this painful journey together

985 replies

lavandes · 10/02/2013 21:24

As we go through this painful journey together we share, cry, scream and shout but we never judge, we know that there is always someone to listen. We always remember our precious children who will never be forgotten and will live on forever in our hearts.

OP posts:
amazingmumof6 · 26/06/2013 21:41

oh white that is fantastic news, so happy for you!

yes it is going to be tricky to wait for baby to arrive and I'm sure you will be even more anxious nearer the birth (I was after MC, I kind of held my breath for entire pg with DS5 who was due 2 days before Yasmin was, so pretty much on the 1st anniversary of her EDD) but as you say one step/day at a time.

one thing you can do is keep your body in best condition you can, lots of water and rest, gentle excercise,good diet and supplementing with multivitamis, fish oil, gentle iron (Solgar) etc as you need.

then hopefully you mind and your soul will react to your body being in general good health IYSWIM.

when are you due? (sorry, I'm sure you said, but I forgot)

I do wonder if My5 had her baby yet or not. I can't wait for her telling us some good news as well!

amazingmumof6 · 26/06/2013 21:43

Helyantha - that's nice of her(!) Angry

what a nasty thing to do to time it that way, poor you!

so sorry for your loss, do talk about him please, this is the place..

(hugs)

chipmonkey · 27/06/2013 00:17

snorris, there is no right way or wrong way to feel and you are still in such early days. I do think ( and this is more from what I know of my cousin whose little boy was born with complex needs and who has limited life expectancy) that when a child is born with severe SN's, that you do a fair bit of the grieving and anger when the child is born, you love your child fiercely but hate their disability and the limits it puts on them. I don't know if it then changes how you feel when they die but I imagine it must.

Bear in mind that all the people on that video ( our own lovely, lovely MrsDeV is there) have been on this road a lot longer than you. The grief is not so raw and they have had more time to process those feelings.

I am almost 20 months down the line. I will never get over her death but it is definitely easier now than then. In the earlier days, I actually thought that maybe she might come back. I had suicidal thoughts. Or hoped that I might get really ill and die and then the decision would be taken out of my hands. Thoughts I couldn't voice to anyone at the time. Now, I suppose, I know she's not coming back and I know that life will be worth living and I have to make the best of it for my boys. It's not the life I wanted but I can deal with it, for the most part.

shabbatheGreek · 27/06/2013 01:39

On Sunday its Matts 29th birthday. I KNOW we will survive that day - and Im great at giving advice that I cant take myself. Oh I miss him. A vibrant, loving sweetheart. All will be well...All WILL be well xxx

mumof2teenboys · 27/06/2013 08:31

It is exactly one year since I saw James for the last time. I don't know what to feel today.

shabbatheGreek · 27/06/2013 08:42

Morning girls xx

Mumof - there is no set of rules for how you feel and what you should do. Just follow your heart xxx

SaintVera · 27/06/2013 16:59

Hi ladies, thanks for all the lovely things people have said. I am not actually as bad as I may have sounded. Numb is more accurate. 'Amazing* , I have two surviving children and a step daughter. I am lucky in that respect. It is just that Sean's needs took over our lives so profoundly, our way of life has been lost too.

snorris I think I would have been baffled at that video if I saw it in the very early days as I was in a state of shock/denial and hadn't gone through many of the feelings and experiences described at that point. I now 'get it' completely.

chip the compassionate friends have produced a great leaflet about the loss of a disabled child. I don't know how it feels to know your child has a life-limiting disability, but the although the loss of a disabled child is very complex ( we were already so used to loss), it is nevertheless the death of a child, with the full force of grief that comes with it. No different in that respect. Nothing could have prepared me for this.

white great news about your baby. Fingers and toes are crossed!

shabba love to you on your precious Matt's birthday. You will be in my thoughts.
Xxxxx

whiteandyellowiris · 27/06/2013 19:15

thanks saint v, and amazing Smile
thanks for the good luck messages

amazing yes ive been prioitzing health atm, been getting good walks, rest, im taking the preg vitamins etc
and taking the best physical care of myself that I can

the baby will be due end of oct.
due to have a c section though so could be mid oct.

chipmonkey · 27/06/2013 20:50

SaintVera, I really didn't mean to imply that the loss of a disabled child is any less, of course it isn't. I'm sorry if you thought I was saying that. With my cousin, her son has been so ill so many times and I know that she did break down at times and ask God to take him rather than have him suffer, but he's still here. And I know at the same time, that he is her life, she cares for him, fights for his rights and that if anything really did happen to him, she would be devastated, every bit as much as I am.

SaintVera · 27/06/2013 21:25

chip, I know you didn't mean that so don't worry at all! xxx I used to wish away my very difficult life with Sean frequently. Just to be able to stop the world and get off, but all I needed was a good break and a bit of time for reflection. 'Be careful what you wish for' is a phrase that I revisit a lot...

I can't imagine what it feels like to have a child who is expected to die all their lives and to watch them suffer. The trouble is, their death results in the parents deep suffering, as we all know. There is no answer

shabbatheGreek · 28/06/2013 08:55

Morning girls xx

mumof2teenboys · 28/06/2013 12:40

Afternoon everyone x

chipmonkey · 28/06/2013 22:31

Good evening, all! Wine

mumof2teenboys · 29/06/2013 08:00

Morning ladies, hope everyone is well.

mumof2teenboys · 29/06/2013 08:33

How do I stop the 'this time last year' thoughts? Due to James not being found for a few days, we don't actually have a definate date of death. The date they used is the date he was found.

We know that he was alive on the friday, because he played football with his friends in the afternoon. That makes today the anniversary of the last definate day that he was alive. I think that he died in the early hours of the saturday morning, no-one has ever given me reason to think any different.

I am struggling badly, I can't stop the 'last year' thoughts, they are literally consumimg me.

This is worse than when Sam found him, it is a continuation of the no answers, just more questions that have been constant since he died.

shabbatheGreek · 29/06/2013 09:06

Morning girls xx

Mum of - Im afraid that I dont think you can stop those feelings and questions. Im already thinking 'what would Matt look like now? Would he have children? etc etc.

I dont know how to stop it. I suppose thats a part of the fact that we loved our children so much. xxx

amazingmumof6 · 29/06/2013 17:25

This reply has been deleted

Message withdrawn at poster's request.

mumof2teenboys · 30/06/2013 08:12

Thinking of you today Shabba, love and strength xxx

shabbatheGreek · 30/06/2013 08:33

Morning girls xx

amazingmumof6 · 30/06/2013 09:57

thinking of you Shabba lots of love x

MiaAlexandrasmummy · 30/06/2013 16:36

Happy birthday Matty! Hope you creating havoc!! Sending love to your brilliant mum too.

Thinking of Barbara and all her family as they find themselves hurting today.

chipmonkey · 30/06/2013 17:17

Happy Birthday Matty!

shabbatheGreek · 30/06/2013 17:24

Thanks my friends. Been a strange day....'melancholy' is, I think, the right word. No phone call from my parents. Mum has every event written on her calendar but never has the right month showing Smile. Just a quiet, thoughtful day.....it wouldn't be like that if Matt was still here Grin - he would have come storming in the house with his big grin on his face. Teasing Tom and playing tricks on all of us. We wouldn't have had enough chairs round our dining table and would have had to improvise!! Then the thought of just how many grand children would we have by now? Yes a melancholy day has been had by us all. Its also my BIL's 61st birthday today - he died in his early 40's and he too was barking mad like Matt. Think they will be having a far more entertaining evening wherever they all are xxxx

whiteandyellowiris · 30/06/2013 17:28

thinking of your lovely matty today xxx

amazingmumof6 · 30/06/2013 17:49

Happy Birthday Matty!
hope you are having fun - I wish you could tell your mum that you are ok!Wink

lots of hugs to you Shabba! x

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