Misty breeze wraps about my shoulders, thinly clad. I shiver not, despite the coolness on my skin. Comfort, I now feel. Is it you my precious Angel?

[chipmonkey]

Starting a new thread for our angel babies
Sylvie-Rose 16/8/11 to 4/10/11 too short my love, too short.

I'm having a hard time dealing now, with people I know IRL, fretting about things that seem silly to me. I'm nearly 42, so some of these friends have kids in their late teens sitting exams for high schools or even higher education.

Refrain. Refrain. Refrain. From telling them, 'FFS, they're ALIVE with no shit awful disease, who cares if they're gay/didn't get into a top school/have dyslexia, etc.'

I'm probably bitter and hateful, but I don't think I am in what really matters.

you're not bitter and hateful expat, you've experienced what they never have and have a muc wiser outlook on the world. It's shit that you have it, but I also struggle like this with people irl. It all seems so shallow whereas we have plunged the deepest depths of horror. Lucky them never having to. Sometimes maybe it wouldn't be so bad to remind them they are blessed I am often tempted

I struggle with not saying that too expat, esp when friends moan about todllers behaviour and I think Ffs at least they are here alive and well.

I.do avoid certain songs, but I find. I find deep meaning in anything

Thanks for helping me through a shit day today everyone x

Dh was showing me how to use fb tonight. And all I could think was its full of twats showing off

Fuck I think I've become really really bitter

white I have felt like that too for split seconds. I could just drive out now in front of that lorry, I could go to the beach, walk in to the sea, keep walking, take too many pills...... but never would actually do it. At least I don't think I would. I simply can't, it's not an option.The boys would be devastated and dh wouldn't cope.
And then, in one of the books I read, the author wrote.
"It's a game. The object is not to get out of the game but to get to the next level of the game" Not exactly those words but that was the gist. So I keep that in the back of my head all the time. No idea if it's right or wrong but it keeps me on this path.

expat today SIL complained to me on the phone that she'd had enough "bad news" because of the conditions her dd and dh have been diagnosed with.
Neither of which are serious and both of which can be managed really easily. Oh, how I wanted to shout out, "You call that bad news! They are both alive and well, will remain so, and ffs stop complaining about the price of gluten-free food, at least your dd is alive to have that food!"
But would have been wasting my breath, she doesn't get it!

white, I too have felt like that. Usually when I'm waitng for a train, I think - I could just step off this platform right about now... and I often in the back of my mind assess the likelihood it would kill me on the basis of the speed of the train, it got quite bad at one point I had a little running list of the right train line, the best day, the best time. I then snap out of it. But on a more day to day level, there is something a little off about the way I conduct myself I guess- eg I was mugged at knifepoint in the summer, but I wasn't that bothered- so what if they stabbed me? So what if that lorry does hit me when I run across the road in front of it. But then I snap back into thinking, no, I haven't done what I need to do on this earth yet to make DD proud (iyswim) and half a mum is better than no mum for DS. But please don't think you're losing it. I also once asked a friend, a brilliant physicist, if he ever had weird thoughts, like 'I could just die right now if I did...' and he said yes he had those thoughts too. It's a bit of an overthinking trait I guess. It's taboo to even mention it but honestly, I have that quite a bit, then I hush it and it goes away for a bit.

white - it IS full of twats showing off!! I am on it but only after the mugging incident and only because it's easy to keep in touch with people across the world, keeps it all in one place which suits my chaotic brain.

I have a lot of privacy controls on FB and anyone who doesn't know or get the aggrieved just goes, tbh. My friends and family have been there for us, in ways I couldn't believe.

When Aillidh died, there were over 300 mourners at her service, many I'd only met till then online but they were there, as the people they are, some wearing their Anthony Nolan tops, as bone marrow donors themselves, one who only joined and learned he was a match through our sharing Aillidh's story. He shared himself, and saved a person's life, that person is doing well now, through Aillidh.

So many more are blood donors. I am, too. I've donated every quarter barring pregnancy and breastfeeding since I was 18. Last time was in October. Just need to get in contact and give for January. I used to think it was for car crash people or some acute trauma. I never realised an O neg was giving for even children with cancer.

Her service was like a MN meetup.

All that blood, all those platelets. For the extra nearly 8 months she got.

And now, I've heard from my friend, whose daughter is 10 months older than Aillidh. Ewing's sarcoma, her girl had. There is no treatment for relapse in all the world. This girl's tumour was 20cm. She lost all her left arm and shoulder joint and went through chemo and much radiation. Her tumour grew tentacles around the nerves, there was much concern, that the cancer could spread to her lungs and heart. Yesterday, she had to have the entire left collarbone removed.

There is no prosthetic, for a patient who has lost so much of her left side. There might be promise, in the US, for such amputees, but for now this girl has no left arm, no left shoulder joint, and no left collarbone, and all nerves eradicated.

Don't blame yourself, white, or any of you. That is the legacy of our loss. On top of our grief, we are left with so many what-ifs.

As MN goes, I might be kind of old (42 next month). But this song was big in the 80s and now it makes me think of Aillidh sometimes. I went through the car, as I said, and I had to hide Xanadu, which I brought to her and we listened to on the way to the GP's, who sent her to Yorkhill, where she went to die.

Sourced the sheet music for this song when we were in the US, and learned it on my dad's guitar. Followed Tracey since before the release of her first album, when I was a teenager. I love this song. 'Oh, I've LONGED for you.' The woman in the paper, she was the adult female match. But she'd had children, and was rejected on the basis of the t-cell antibodies she'd developed to her own children. If I could go back, I'd demand they used her or Aillidh's father.

But there's no going back, is there? You see, all of us have what ifs on top of our grief.

Morning girls xx

Oh the 'what ifs' and the 'if only I hads.'

They will fill your mind and play with your emotions and feelings. They will kick your brain and heart so hard if you allow them. Why did I buy Matt a bike? Why did I allow him out of the garden to play on it?' 'Why did I not insist that Gareth went to the hospital every day just in case they could save him?'

I still have those thoughts at times - but I have now realised that they make me very physically and mentally ill if I allow them to march through my life.

So I pin on a smile and try to joke about everything. Not sure which is worse - pretending that 'I'm fine' or carrying around regrets.

All I do now is that I did the best I could do with what I had at the time - as did we all. I know that I would have given my life in a heartbeat if it meant my lads could still be here.

*sat here in proper tears, thank you for sharing that expat = beautiful, beautiful Aillidh and beautiful song

watched it again, oh expat

shabba- I get the what ifs a lot too- they haunt me sometimes, but it's a little easier now than it was to start with as I can step back and realise at the time, I did the best thing I could do, but it doesn't stop me thinking the same thoughts

oh expat...how beautiful that film and how beautiful your girl xxx

Remembering Sean who died six months ago today on 9th July, of SUDEP (Sudden Unexpected Death from Epilepsy). We love you so much beautiful, funny boy and we carry you with us always. Not a moment goes by without thinking of you. You taught us everything and we are rich for having you in our lives for 16 years xxx

Thinking of Sean, StVera xx

A man came and collected my double buggy which I had put on freecycle. When it was sitting in the hall waiting to be collected, ds4 asked about it and I told him that he had lain in the back and that ds3 had sat in the front. He said, "So ds3 was the leader"
I said yes, he had been. And then he said
"But why didn't I get to be the leader?" and I started to explain that once ds3 got too big, we didn't need the double buggy. And he said "But I should have been the leader and Sylvie-Rose should have been behind me"
Which was true.

chip, the 'should haves' are so painful. Sean should have started at college in September, away from the school he didn't like. We should have been planning his adult life. I should have been keeping going with all my disability committee work, striving for better futures for DS and other children.

Sean should have been here, with us.

Sylvie Rose should have been in the buggy with your DS 4 as the leader xxx

Sean's lovely carer gave me this quote yesterday. I don't go with the bit about the pain stopping (and actually, I wouldn't mind someone fixing the hole in my heart) but I like it nevertheless..

'It's the cliches that cause the trouble. To lose someone you love is to alter your life forever. The pain stops, there are new people, but the gap never closes. How could it? The particularness of someone who mattered enough to grieve over is not made anodyne by death. This hole in my heart is the shape of you and no-one else can fix it. Why would I want them to?' - Jeanette Winterson

Lovely quote, SaintVera. Think the pain stopping possibly more likely to apply to someone who's lost a person other than their child.

I am in pain today. The emptiness and boundless sadness has returned. Barely anyone noticed that it was 6 months since DS died yesterday. I can't be doing with announcing it on fucking horrible Facebook, tempted though I was.

I miss him with all my heart. I don't have anything to say to DS2, poor soul, so he sits on his Wii game while I just waste my time on this laptop. I must get up and do something.

I can feel resentments I have suppressed filtering back in. Sean was at his special school from the age of 4 until he died aged 16. Nothing from the Head since one call just after Sean died, not even a Christmas card. It feels unbearable that the Head could just not respect us and Sean's memory enough to check in once in a while, or get a bench in his memory, or a tree, or ANYTHING. It hurts badly. I didn't get on with the Head - he was a difficult man to deal with unless you agreed with everything he said, and I didn't - and I am sure he didn't like me, but the death of a child should transcend all past differences.

Luckily Sean's respite home have been lovely and sensitive and are getting a bench in his memory. They really saw the beauty in my son, and he was a happy, playful boy with them, not the sad mute he was at school.

((())), Saint. Was 6 months for us, too, on Monday.

Thank you for your much needed hug expat. A huge ((((hug)))) for you too, especially this week, for getting through the worst six months of our lives, (I don't usually do hugs with brackets but you deserve one!!)

Morning girls xx

Morning, shabba! Although it's evening now!