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Original poster

'The mention of my child's name may bring tears to my eyes, but it never fails to bring music to my ears' - bereaved parents thread.

993 replies

DawnOfTheDeementedDead · 16/10/2011 14:44

'PLEASE SAY THEIR NAMES'

The time of concern is over. No longer are we asked how we're doing. Never are the names of our children mentioned to us. A curtain descends. The moment has passed. Life's slip from frequent recall. There are exceptions: close and compassionate friends, sensitive and loving family. Still look. Still ask. Still listen. Thank God for them. For most, the drama is over. The spotlight is off. Applause is silent.

But for us the play will never end. The effects on us are timeless. What can be said, you ask? Please say "their names" to us. Love does not die. Their names are written on our lives. You may feel that they are dead. We feel that they are of the dead and still they live. They ghost-walk our souls, beckoning in future welcome. You say, "They were our children"; we say "They are". Please say "their names" to us and say "their names" again. It hurts to bury their memory in silence. What they were in flesh is no longer with us. What they are in spirit stays within us always. They were of our past but they are part of our now. They are our hope for the future. Please understand we cannot forget. We would not if we could.

We know that you cannot know, yesterday we were like you. Understand that we dwell in both flesh and spirit. We do not ask you to walk this road. The ascent is steep and the burden heavy. We walk it not by choice. We would rather walk it with them in the flesh, looking not to spirit worlds beyond. We are what we have to be. What we have lost, you cannot feel. What we have gained you may not see. Please say " their names" for they are alive. We will meet them again, although in many ways we've never parted. Their spirits play light songs, appear in sunrises and sunsets. They are real and shadow, they were and they are.

Please say "their names" to us and say "their names" again.
They are our children and we love them as we always did.
More each day.

'PLEASE, SAY THEIR NAMES'

In memory of my darling forever-baby Ciaran. I loved you from the moment i saw those two pink lines, and i'll love you til i draw my last breath as a wizened old woman of 103. You taught me what it was to truly love, and although you could only stay such a short time, you made me a better person and my world a better place. I'm so glad to have known you.

OP posts:
Original poster
DawnOfTheDeementedDead · 25/10/2011 07:28

Morning folks.

Whatever - You'll be in my thoughts today. I hope it goes as well as these things can.

OP posts:
shabbapinkfrog · 25/10/2011 07:32

Whatever hope you get the answers you want today and just to say I will be thinking about you xx

lavandes · 25/10/2011 07:58

I will be thinking of you and your family today whatever xx

CheeseandGherkins · 25/10/2011 07:58

Morning.

Whatever hope you find out some answers today, when we had the pm results it was really hard to take in and I didn't remember much of it so it's good to write things down if you can. I learnt more from the letter they sent out detailing it afterwards. xx

chipmonkey · 25/10/2011 09:58

Thinking of you, Whatever

chipmonkey · 25/10/2011 11:21

shabba you're needed here

shabbapinkfrog · 25/10/2011 11:38

Thanks - have posted x

Whatevertheweather · 25/10/2011 11:39

Have been to get the results. Erin had an extensive cancerous tumour in her abdomen and diaphragm. We are completely in shock - of all the causes of the hydrops we'd read about this was not one. The consultant said it is so very very rare that no-one in Portsmouth or Southampton hospitals has ever seen it before and they cant find a similar case in any reference books. The tumour has been sent for specialist oncology testing to determine where it originated. There is a chance that it will have left behind cancerous cells in my body so I may need to have some tests done. They have asked our permission to publish Erin's case. Positives are no effect on Katie, not genetic or chromosonal and so unbelievably rare it really shouldn't happen again in future pregnancies.

Everything else about her was completely and utterly perfect. She had grown and developed beautifully despite the tumour - what a strong girl she must have been. My beautiful, brave girl never really stood a chance no matter what I or anyone had done.

Just a mutation of one bastard cell.Feeling completely drained and very very unlucky Sad

shabbapinkfrog · 25/10/2011 11:47

I have never, ever heard of that before either. Sad very unlucky and yes, she must have been a very strong girl. Very good that it will not affect Katie. I can imagine just how hard all that has been to hear and to take in but I am relieved that you know what happened. Lots of times the doctors will say there is no cause. As difficult as your news has been you have 'something' to be very angry at - bloody cancer is evil. Im just sorry that you have even had to be in this awful situation that we have all found ourselves in. I think you will feel drained for many days to come - please be kind to yourself. Thinking of you and your family xxx

Bluetinkerbell · 25/10/2011 12:04

whatever I hope you can now feel slightly better that there is nothing you or anyone could have done to save her! Like you said she was just so very unlucky, just like my Sterre.
Be proud of your Erin, her case might mean that in the future they are aware of these things and might be able to develop treatment or something!
I hope that if they find something in you, that they will be able to treat or do something about it!
Also glad you go the all clear for any possible future pregnancies!

Thinking of you and your family! x

chipmonkey · 25/10/2011 13:01

Oh my goodness, Whatever I have never heard of this before, either. Poor Erin.Sad Very good news for Katie though and hopefully you are not in any danger yourself although of course it is good that they found this out so you can be monitored.

CheeseandGherkins · 25/10/2011 17:24

whatever you must be so drained now, how are you feeling? I hope this won't leave you ill but I'm glad you got some answers. Has it helped at all? xx

Whatevertheweather · 25/10/2011 20:17

Feeling very shocked and a bit scared. It's all so unknown. I didn't even know that unborn babies could have cancer. Have tried googling but can't find anything similar. We're reeling to be honest.

The post mortem report does not make pretty reading. I (or they!) have no idea how she continued to develop and grow completely normally. It would never have been picked up on a scan; the way they described it was like a very thin web of tumours only 4-5mm at the thickest part but so very widespread Sad

Bluetinkerbell · 25/10/2011 20:32

whatever big hugs for you! x

shabbapinkfrog · 25/10/2011 20:40

Whatever we waited many months for the inquest on my DS3 Matty. The only part I can remember of the inquest is the coroner standing up and saying......'I was looking at the body of a well nourished and well cared for handsome little boy........' no idea what he said next and cant remember the rest of the inquest. I got worried about it all because Matty was tiny and skinny for his age and I thought they were going to say it was my fault. I remember feeling shell shocked after that...it felt like I had dipped down again. It took a while to stop feeling that way but eventually I did. Like I said a little earlier - please try to be gentle on yourself. Remember that your precious little lady was strong and did everything in her power to keep going....and, you, loved her dearly and that is something that I personally feel she knew. Holding you close and thinking about all of you tonight xxxx

chipmonkey · 25/10/2011 22:45

What a lovely coroner, shabba!

chipmonkey · 25/10/2011 22:50

Sorry Whatever meant to say, I don't think anyone is immune from bloody cancer. It's a nasty, nasty disease and if you think that a toddler can get it, then it makes sense that an inside baby can get it too, it doesn't discriminate.Sad And I do think that when small children get it, it's more lethal than when an adult gets it, because small children are supposed to grow and thrive and so do their cancersSad People in their eighties can live with some forms of cancer for ages because their bodies don't grow the cells quite so well. It's very, very unfair.

shabbapinkfrog · 26/10/2011 06:48

Morning girls xx

chipmonkey · 26/10/2011 12:25

Good afternoon, Shabba!Grin

Bluetinkerbell · 26/10/2011 12:43

Good afternoon everyone! x

chipmonkey · 26/10/2011 14:11

Hi Blue!

Whatever how are you doing?

lavandes · 26/10/2011 16:22

Afternoon ladies

I think there is someone on another thread who may need us [' When Daddy can't fix it! '] I have no idea how to link.

shabbapinkfrog · 26/10/2011 17:02

This one Lavendes?

lavandes · 26/10/2011 17:15

That's right Shabs you are so clever!!!xx

Moominsarescary · 26/10/2011 17:18

Hi everyone,

whatever im so sorry about Erin. What a strong little girl she was. It seems so unfair that any child should have cancer.

Hope everyone is ok, I seem to be having a bad week, I don't know if it is finally sinking in or if the kids being off and fighting with each other constantly is making me feel abit low.

I keep looking at pictures of Jacob and I just want to be able to hold him again, we have a keepsake box comming on Monday to put all his pictures and things in and I suddenly remembered we hadn't taken his I'd tags from the hospital off his legs, irrational I know but it's realy upset me as we have them from the other children.