I bought this sling for Sonny months ago and have used it once or twice.

I love slings but Sonny never did. Plus, I hate getting all hot and sweaty so the pram it always was for me!

This is such a gorgeous sling,  wish he had more upper body stability so I could wear him on my my back, especially with Sos going to school and not having to worry about running after a 3yr old too.

It's plain black and in A1 condistion. Im offering here first before ebay. Any interest?
It cost me £37.95. I's sell it for £20.

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I have just had a long conversation with Nkki after Dad's visit and announcement on Monday which I blogged about.

Firstly I want to apologise to Nikki for the horror she must have felt at reading  what turns out to be an innacurate story. I Love that girl and even confessed to her that I lie in bed wondering what would happen if she couldn't handle it or wasn't there in the first place. Not to offend her because I know she would never give up on Luke, nor he on her if the situation was reversed but you can appreciate what early hour insomnia does to you.

Don't be mistaken things are very serious. I haven't blogged about Luke for a long time because there really has been no change, certainly none exceptionally positive. Dad saw his leg move a little last week. Nikki has developed a very strong communication with him through lip reading. Of this I am so glad and a little jealous. I simply can not understand him and it takes every fibre of my being not to give up, sit down and just hold his hand and jabber nonense at him. Infact that's usually what I end up doing. And the guilt is all consuming.

Here are the facts that I know now. Luke is not about too die. There was a meeting held with parents and Nikki and top neurologists. They are not sure why the original surgery has not worked. Luke is in poor health. It is serious BUT it is not the end which somehow my Dad and got confused. I don't intend on asking him, he was extremely emotional and I believe he felt he was telling me what he thought was fact.
LUke is having a different kind of surgery on Weds so fingers crossed. There's a almost certain chance Luke wont walk again. His body has suffered a lot but he has fought like a dragon. I think for Nik.
There was talk about moving the wedding forward but as Nikki made very clear to me, things aren't at that stage just yet. Let's get this operation on Weds over with and see how he is.
He hasn't really been awake since the last surgery which was (Oh god Nik, I'm sorry if I've got this wrong too) last Monday. He isn't improving anyway. So that's that. 

I haven't cried much at all since Monday. I haven't chatted, I've blocked everyone. I've pushed people away (my old fav) but on the phone to Nikki today I wept. It's not over by any stretch of the imagination. If Lukey gets through this and can't walk then fucking great. Sorry Luke, I'm sure you won't feel the same but the other option is too much to bear.

I think that's it. I think Greg and I are going to visit this week. Greg is our youth theatre leader from when we were in MPYT, although I haven't told him the latest news.  I do think visitors who have been putting it off or not realising how serious it is should think about visiting him.  It's good for him and it's good for you. Hard. Very, very hard but suck it up guys,

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Surgery Weds though so he'll be no good to anyone. But Nikki said even if you're there and he's asleep, or seems to be, he can hear you. His body is too exhausted to respond some fo the time but Lukey's in there.

Now I'm going to puke up my empty guts.

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My brother Luke

Brotherly love ;)

Brotherly love

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Share a song you loved way back in the day.

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Sonnybirth

I officially joined the CdLS Foundation UK and Ireland this week.
I thought somewhere along the line I had joined in the months after Sonny's birth but my in-laws became members a few months ago and I realised I was not on the registration list.

Today I recieved some literature. Some back dated issues of the regular newsletter, a dvd and a book called 'Facing The Challenges'.
I had cried a fair bit this morning. So many faces of children and adults with cdls that could be Sonny's sibling. SO many true words written that can punch the breath out of me.

In the chapter 2 there is a section on grief.

'...family members may experience feelings of anger, guilt, denial and sadness, these feelins do not interfere with the ability to love someone with the syndrome. Whether you try to help grief along or refuse to acknowledge its existence, it will run its course. It probably won't happen quickly, and it is often painful, but it will happen. Just as a child grows and changes, so will his or her family. Although the old dreams may not fit anymore, new dreams will take their place...............Sadness is also very common, and can manifest itself in crying spells, difficulty with sleep, changes in appetite or decreased interest in activities. Parents of a child with a disability often feel emotionally isolated from each other, from family and from friends.'

This is just a short excerpt but it sums up my feelings in the year that followed Sonny's birth. I wish I could talk to old friends and explain some of my actions but I can't. Sonny brings me only great joy, I don't like to dwell on the negative when it comes to him but I could have done with this 'cdls bible' a lot sooner. If only to pass to friends in an attempt to make them understand that what was going on on the outside did not necessarily truly reflect what what going on on the inside.

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I am going to try and become a more active member of the foundation. I have written a short report and send a photo of Sonny at birth to be included in the recent updating of the cdls directory so that newly diagnosed parents can contact me if they wish. This is not something I am entirely comfortable with only because I am not a phone person. I did not feel ready to contact another parent for well over a year after Sonny's birth.

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Sylvie starts school very soon and my life will become more focused on Sonny's development. Jim and I have visited a few schools and I have decided that I have to overcome my driving phobia.

My little boy has not been with us for 2 years yet but I find it impossible to remember who I was before he turned up. I lost my way for a while but my love for Sonny remained constant. Now I have come to terms with my future and my role in life. I am excited and look forward to being his mum, his best friend and his carer

Mummy missed you!

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Sonny had a session in the sensory room in the next town from us this morning. I got the date wrong but thankfully it was empty and there was a staff member more than happy to join us. He loves just chilling out and watching the bubbles and lights more than anything.

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Luke has meningitis again.
He had a really good day yesterday, Nikki said he was being really cheeky. He turned in the night and had a temperature this morning. A scan revealed fluid on the brain again. He is back in critical care and awaiting further treatment to battle the infection.

I should never have let my guard down.

He's beaten this before. He has to do it again.

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I have been home since Monday. Im sorry I haven't updated but I haven't been online, my heart isn't in it but I' feel bad not responding since I get so many texts and messages.

Luke got through the vital 48hrs and sadly I had to return due to lack of funds and family problems between parents. Thankfully, I got to say goodbye to Luke and his eyes flickered. I felt a little better and have tried to give my head (and my heart) a few days off by trying not to think about it too much other than my daily update.

Luke had a tracheotomy this afternoon so that he could come off the ventilator and hopefully commuicate a bit better. He's still very confused, sedated, paranoid and sleeping most of the time. He came round initially to Nikki's perfume which is awfully sweet.
He's very scared from what Dad says, just by the look in his eyes and he's one arm is making involuntary movements. He still has meningitis but when I left Mon, the drs were pleased with the way the fluid was draining from his brain. Nikki and Dad both said that before he went in for that op, before I got the last bedside call that he was grey and didn't look like Luke. They felt that he wasn't going to make it.
He will be HDU for a long time, it's a very long road ahead and we have no idea what the future holds. Yes, he's better than when i have been with him but he's still very ill. We don't know how he will be physically or mentally. His confusion is very scary and the phyiscal toll is apparent.

Myself? I feel torn. I was glad I got to be here for Mother's Day, even if I had to leave in a hurry again. I'm mentally exhuasted and constantly tearful of course but so what?  Nikki is by his side every day. They have both missed 2 months of their course. Not really an issue for Luke but Nikki has missed a vital dance model. I went to Preston hoping I could be some support to her but left feeling that she knows she's ultimately on her own however many friends and family try to support her. I felt that when Sonny was born. The help is there, plentiful, but sometimes resorting to solitude is the way to cope.
I can't look at photos, listen to songs at the moment. If I do I break down. Rob is my rock. He has done so much. Jim and his family have helped too aswell as Janny. Thankgod for them all.

I want to be with my brother. I can't. I haven't drunk since Sunday. Was beginning to rely a bit too much again. Not celebrating my 30th next week. Unfortunately Rob is training that day. Looks like I wont be able to get back to Luke until a week today which seems such a long time. I know he'll never remember the week I spent with him but I will never forget it.
It will haunt me, it was terrifying and upsetting but amidst all that he made me laugh with one thing he said earlier last week and it still makes me smile now.
Nikki and I went in one morning and he was very confused. He was sure that we were a family a super powers and totally worried that he'd revealed his power to one of the nurses. I tried to calm him and said I'd ask if he wanted but he firmly said not to. Luke is very into Heroes and a trekkie etc. I told him gently that we weren't a family of super-powers, we were a disfunctional family, yes!, but sadly no super powers. Boo!

Going round and round in my pessimistic head that tale being told at his funeral.  There, it's been said. The F word. Probably very unhelpful to think in that way but then what I saw last week will haunt me, like I said.

One day, hopefully, I will be back on form. The world will have stopped spinning slightly askew for our family and I will be able to write my usual crap. Maybe I'm not that person anymore though either.

From now on i'm stopping open posts and making it neighbourhood, freinds and family only. I have been doing so that local people can read Luke's updates but now that people know the situation I'm sure they can find out some other way.

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Luke had a seizure in the night, went back to HDU and is back on a ventilator. Totally sedated. He has fluid around his  brain which they need to remove and then pump full of anti biotics. The next 48 hours are crucial.

Dad revealed his fear that Luke will be permanently disabled. After caring for him for 4 days on and off I can't imagine ever seeing Luke again. Not the Luke I've known for 27 years anyway.

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Just got back from Preston. Luke deteriorated from the time I got there Weds until today, he had a lumbar puncture and was back on  morphine. I can't describe what the past days have been like so I won't try.
It was confirmed on my way home that Luke has contracted Meningitis.

I don't really know what to say. Im just letting people who care, know. I've come home for Mother's day but hope to get back in a few days.

Carol King's 'So Far Away', keeps running around my head.

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