Christmas Tree, Oh! Christmas Tree...

The Christmas box came down from the loft, with a heave ho! and a thud onto to carpet, this year with two years of attic dust and starling feathers as it never saw the light of day last year. I noted that in Sharpie marker  'WE WERE HERE'graffitti, 2007 Dan and Lou, 2008 it was the two of our names added by Marlee, 2009 our 'family' grew and then there was Lilly and then 2010 - nothing. It was weird, that I'd started this three year pattern hoping, maybe expecting that bit by bit names would be added to that role of honour. You forget all the things in that box don't you? Good job I got it down before hitting the local garden centre else I'd be over run with Christmassy paraphenalia (yes people that is possible!) I like Christmas pretty neat, organised, cute and classic, reds whites, gingerbreads. I don't like tinsel, sorry, but I love fairy lights, they make the dullest room feel starry and magical.

I had ordered myself this really pretty ceramic angel back in June for this year, its only about 10cms in height but then the tree is a dinky this year, modest to co-incide with our dampened Christmas spirit, but special all the same as this potted tree was bought last year in the hope that our little girl would make it home to see it. She never got to see a real Chistmas tree, so sad that I never saw these lights reflected in those beautiful big eyes. So the pure fact that I have kept it alive all year and seen it grow a whole 1/2 a foot! I was thrilled to bring it into the house and decorate it with this particular angel decoration. Christmas may prove to be a particularly hard milestone but I'll carry on taking deep breaths and smile and work through it, one day at a time. 

Religious Visit

Leighton Hospital sent us a letter inviting us to the Rememberance Service at St. Peter's Church at Church Minshull, it's usually held at the hospital but this year the tiny wooden pews in the sweet and homely chapel were full to the rafters of families who came to pay their respects.

Those of you who that know me will be aware that my relationship with God is somewhat - undecided, although I was christened as a baby, sung in a methodist chapel as a child then had a civil wedding ceremony, I have moved further and further away from religion. Not by choice so much perhaps more by circumstance. But I remain open mindeed - not to be easily swayed but to chose the things that suit me - I will not follow a crowd.
Dan is agnostic I think he describes himself, he believes in science and evolution- so I was a little suprised that he wanted to come along to a church with me but it was important, it would be just this one time and it was to remember Ellie.

There was almost a distinct Christmassy feel as we waded in with the other 'guests' and found a good hiding place at the end of a pew next to the wall. As I looked around the room I was strangely comforted by the sheer amount of people of all ages who had come along to remember a lost child or baby. We all sat in mixed stages of grief and as hymms were sung softly, some more exuberant than most.  I then felt a hand in mine and pressure being squeezed slowly as tears began to release themselves and flow steadily down both our cheeks.
We listened to stories about angels and God adopting our children. I know Dan  does not believe that - he is angry that if God is real why would her take her from us. But I undestood at this point that it was science that was responsible, genetics that made Ellie the way she was, and actually if God was real and took her away he took he so she wouldn't have to suffer.

So that's what I decided. To accept that might just be God's will. I might not like it - but if I were to believe in Heaven then Ellie is there, isn't she? Not an Angel, but just a child and hopefully she is growing in a way she would never had chance to on Earth - and one day maybe I will get to hold her in my arms again.
And if there isn't Heaven, then when I die perhaps all I will know is darkness - I will cease to be - so I will not know any different.

Christmas is approaching - this time last year we were already embedded into Ward 17, about to embark on the toughest journey of our lives.
I pulled out the bag in which I kept all the cards we were given last year and the decorations that we adorned on her cot and walls. I will tidy them up and make space for them in our home.
We have been without Ellie for 9 months. It still hurts like it did then, only the pain is spread throughout the day like a dull, persistant headache rather than constant numbing migrain. No pill makes it go away.

Thank You!

Dan and I were invited to pop along to the Davenham Ramblers Society Annual Dinner last night to collect a cheque from their sponsorship money raised on their walk on September the 4th - Which would have been Ellie's birthday. What a great bunch of ladies and gents who obtained a fabulous £731.50 for the cause!!! Special Thanks go to Gill Bennett for suggesting us!

At last we've been Tweeted about!

Tessa Sanderson CBE

@tessasanderson

http://www.tessa.co.uk

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tessasanderson Tessa Sanderson CBE 

@danprince1 The event was great full of heart. Thank you for sharing your story I will remember. Much love to you both xx

1 hour ago 

tessasanderson Tessa Sanderson CBE 

@ 

@danprince1 @dragonjones@Lord_Suga@damekellyholmes@DuncanBanatyne@piersmorgan@pinkshoeclub a lovely couple it was a tearful journey x

1 hour ago 

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tessasanderson Tessa Sanderson CBE 

@ 

@EstherMcVeyMP Really enjoyed Thank you they were true champions.I was so proud of your Community and Chester a very pretty place to visit

11 hours ago 

Bittersweet Symphonies...

I have been to lots of corporate dinners and work related awards do's in the past few years, I was never a winner - I'm always an almost won, a runner up if even a competitor in the first place! But Hey!, that's OK, I've never had huge drive or ambition -  I'm used to being average, ordinary - the world needs people like me that just keep on plodding - not enough room in this world for hundreds and thousands of go-getters.
So it was, needless to say - weird last night - anxiously awaiting the compare, journalist Trevor Green to read out our story in a room full of prettily dressed ladies, smart gentlemen, special children, ladies and the engaging and warm Tessa Sanderson.
This award rather than any award in the whole world that I might have liked to have been considered for, like an Oscar, Ivor Novello or even Chocolate Sales Person of the Year award - above all of these things I really wanted for Dan and I to win, for Ellie.

The citation covered our story succinctly, each little word reminding me of the journey we had been on, and the bumps in our road before that eventual 'crashing into the tree' moment. So the tears flowed, enevitably. The lovely representative from Scottish Power, Ann announced with sincere delight that we were the winners. (Cue the Gwyneth Paltrow moment) Dan bounced on to the stage hugging Tessa like a long lost friend while I ambled in my precarious (for me) 2 inch glittery mules to the words of Eva Casidy's Fields of Barley (finally finishing off me and my Mother in one fail swoop).
I am, looking back slightly, vainly, disappointed that our award photograph, which may be in the local paper next week will feature by beaming husband next to the first Mrs Rochester, with smudgy mad eyes and  red blotchy face peering out from the preened curly hair and diamonte jewellery, such effort only every really seen previously on my wedding day.
Many people who had been judges came to congratulate us on this bittersweet award and we are thankful and honoured to share it with everyone who helped and supported us, especially the ward of course!
But mostly - this award was a testament to our strength together as a couple, as a family.
Here are a few photos from the night for those of you who don't go on Facebook.  :-)

Grieving Work

My lovely Facebook friend in Canada was telling me the other day how she'd had a 'crying day'. She lost her little boy a few weeks after Ellie passed away. I wasn't sure if I'd had one for a while and started to feel wracked with guilt that maybe I was starting to not feel sad anymore. Until I had a 'crying day' yesterday too.

You'll have to forgive me a little  - you see, I've never really done 'death', I've lost grandparents, dogs and cats but that really all and most of that was when I was young so really it never really touched me the same way. So when I have been feeling guilty, or anxious or angry and frustrated apparently it's all ok, natural even...

My friend told me that we all deal with grief in the same ways just at different speeds and times. She also sent me a beautiful book to read about dealing with grief from the loss of your child. Its a funny sort of book. I looked at the front cover for quite a few days before I actually decided to read it.

It's got a big comforting font and short succinct chapters that make for good reading for a'bereaved parent' who has an inability to sit still for more than five minutes or concentrate with out dark thoughts clouding their minds.

For that is who I am now. Not Laura. But the woman who lost her baby. The bereaved parent. 

This bereaved parent realised that in order to move forward there was a lot of going backwards to do, so it has been with trepidation that I have begun to read Ellie's blog from the beginning. Dan thinks this is a bad idea. Perhaps he was right as yesterday was a tough one but it was almost like just having her back with me for a little while. 

Ellie was at home with us where she belonged this time last year, but we knew that things were not right...if only things had been different, she would be crawling now, perhaps gaining a few teeth, perhaps keeping us up all night screaming with a temperature from some bug or flu and I still think that would be better than the alternative. I still haven't gone to sit in her room. I still wipe any fleck of dust from her little urn every morning and I still kiss her photograph goodnight before I go to sleep. 

I am feeling very pushed and torn, many people who sees me mention that perhaps I should be back at work, that it's no good me being 'idle' at home.But I AM working, I'm working on my grief and believe me it's the hardest job i've ever done. 

Last Year in the Autumn leaves

Pink and Purple Fundraising

Press Release

 Please support if you can!

“Oasis Hair in Nantwich will be holding a Christmas Open Evening on Wednesday 2^nd November 2011 between 6.30pm and 8.30pm, to celebrate our up coming third birthday and to fund-raise for Breakthrough Breast Cancer and a local charity Little Miss Ellie Fundraising.

Our lovely stylists are putting on a night of demonstrating the latest hairstyling techniques, hair consultations, a raffle and other fund-raising events for all our fabulous new and existing customers.  As well as fund-raising in the salon, Oasis Hair will also be stocking this year’s Pink Orchid Limited Edition stylers from ghd designed exclusively to raise funds for Breakthrough Breast Cancer.

48,000 women are diagnosed with breast cancer each year and Breakthrough Breast Cancer is committed to funding prevention research; looking at identifying new risk factors, discovering the genetic causes of the disease and advising people how they can reduce their risk.

Little Miss Ellie started in honour of Eleanor Prince, who had a rare genetic disorder called Zellwegger Syndrome.  She spent most of  her life at Leighton Hospital's Child And Adolescent Unit.  Fund-raising will help provide essential specialised equipment on the ward and sensory equipment which isn't currently funded by the Trust.

Juli Frodsham owner said “We’re really looking forward to the fund-raising and having lots of fun in the salon. We’re hoping as many people as possible visit us to help us raise vital funds for Breakthrough Breast Cancer and Little Miss Ellie. We’re also stocking the stunning new ghd Pink Orchid limited edition styler which carries a £10 donation to Breakthrough so it’s really easy for our customers to get involved.” 


OASIS HAIR

In the News Again

Article in today's Local Paper....

Painting up the target...

For those of you who don't know Dan so well, in another life he used to run around fields with a gun, jumping over big blow up shapes putting paint bullets into people.( I'd like to state that at this juncture that it wasn't me that made him give it up, he has a bad shoulder ;-))
There is a big tournament this weekend in Matlock in Derbyshire where these kind folks are donating half of the players entry fee to Ellie's cause....huge thank you to Becky Childs for organising this. :-)

If you are interested please take a look....
http://www.uk-masters.co.uk/

Update nearly £400 raised on the day - huge thanks to everyone!!!!

Nominated for Ellie...

I had a call to say that Dan and I had been nominated for a Local Citizen Award. What an odd feeling. Of course, there are lots of other people who have done amazing things but I guess none of us really think we should be awarded for it. The reporter at the Chronicle asked me why we did what we did.
I don't know. I think we started fundraising because we were so helpless in many other ways. We couldn't save our child she was going to die that was certain, so we would create a legacy so people would rememeber her.
So I guess it's very selfish what we did.
But the more I think about it, the days and nights we spent, living in that ward, through winter when the nurses were rushed off their feet and  the ward had to be closed because it reached full capacity. And thinking back to all the names on the board that were written on then wiped off while all the time Eleanor Prince remained in permanent marker it seemed.
I realise why we did it, to say Thank You. Because words on a card just aren't enough.

Our Girl x

So this nomination isn't just for us its for the ward.

http://www.crewechronicle.co.uk/crewe-news/campaigns/your-champions/2011/07/22/your-champions-2011-search-for-community-heroes-to-begin-next-week-96135-29100922/

The 'Not' 1st Birthday

This is my favourite picture of our little girl. She just looks so perfect - it breaks my heart knowing I'll never see those beautiful eyelashes flutter. So, so sad that we cannot wish her a happy first birthday today .
Some people might wonder why I'm still writing this blog, it was after all always Ellie's story, Ellie's words, that's what people were interested in. Every time people have hinted that perhaps I should finish writing I wonder if it's something I would do for me or for them. Because, truly how many times can one person say, 'thinking of you', perhaps they are now bored, perhaps there is still the need to peak into our lives and see if we are getting on ok and I guess, to eventually see whether we find happiness once more. Who knows...but for me, this blog has been about surviving the most horrid thing in the world and the support I have received because of this is unmeasurable, so I guess it's worth putting your heart out on your sleeve because when people care, they really care.
So for now this blog deserves to continue, if not just for a little while, to satisfy me more than anything, to be able to look back and prove I WAS A MUM! And it was amazing, however brief, Eleanor Florence Prince changed my life forever when she was born, just never quite the way I expected, but even so, I have known real love because of her. And for that, I really am honoured.

We decided to send some purple birthday baloons up to the sky...we will do this on every birthday.

A little fruiting Crab Apple tree in our garden to celebrate Ellie's would have been first birthday. It fruit in September and should Flower in March

Taking a little time out....

Dan and I have spent a week Camping in our van, the good news is we are still married. The bad news is that we are home now and in two days time it will be Ellie's birthday. I have had moments while we were away of feeling waves of sadness wash all over me - one day by the sea it was so beautiful... met a couple with their little girl who was about three I guess. I spoke to the lady who said that her Dad had brought her to this spot some thirty years ago when she was little and she wanted to bring her daughter too. Then I longed...I longed to have my girl there, to show her this beautiful spot and for her to come here with her daughter in another thirty years. Gertie, our camper would if still alive(!) be nearly 70years old by then.....better look after her just incase...one day...maybe you never know....
Another day we met a lovely family with a bay camper just like Gertie, Dan ended up chatting away and Ellie came up in conversation. The father asked if we had a picture of her, it seemed such a rare moment, to be able to show someone a picture and be so proud...to say 'Hey look, it might just look like it's just the two of us here, but we were a family not so long ago....and look this was our beautiful girl. It was hard to talk about her but good to remember and for someone else to know about her and hopefully read her story.

When we got home today we had a nice surprise.

There was a knock on the door from a lovely lady called Wendy Graham, who is from our village and works at the local medical centre as part of a team of district nurses.
Along with coleagues, Kirsty Sewell-Threadgold, Magalie Prot and Carol Ashton have been very busy making cards, cakes and jewellery to raise Money for Ellie's fund. She gave us an envelope with £100 today which we will add to the fund.
Thank You so  much to those very kind ladies for following our girl's story and being so touched as to want to do something to show your support. The fundraising has come to an inevitable slow no, so it was lovely to recieve this 'birthday' present for Ellie.

A Post about post

We received post today for Miss Eleanor Prince. It was a statement from her Child Trust Fund. Something we have neglected to cancel as yet. The letter accompanying this statement is written directly to the beneficiary, Miss Prince, it sent a shiver down my spine.
I read briefly some of the conditions of the letter and the trust fund on the rear, mentioning the accessibility of the fund on her 18th birthday. That was a pretty big punch in the stomache. When I'd picked myself back up off the floor Dan telephoned the bank.

Sadly their response was a simple 'just bring the death certificate in to the branch and we will close the account and transfer the money', no 'I'm sorry for your loss Mr Prince'. Cheers Nat West.

Angel Tribute Video

This last week in Omaha in America a large group of families got together for the first ever Peroxisomal Biogenisis Disorders Famiy Conference. We didn't go obviously, its a long way and a lot of expense, but this video was screened during the conference. I'd warn you now - its not the easiest thing for anyone to watch. And I'm still shaking now, i think it's just about broken me. But she's there, our little star, shining brightly, with all those other beautiful babies that lost their lives too soon. I send out the biggest hug to those families who know just how much it hurts.

http://www.youtube.com/watch?v=6fDo5wGVSjU&feature=share

Tick Tock

On Tuesday we became 5 months further away from our baby girl. Which means that we are on our way to our slow and excruciating 6 months culminating in what would have been a magical fun birthday celebration.
So then what to plan for - running away, pretending like it's not happening but all along knowing that the 'right' thing to do is to face up to it and do the day...experience the pain, to help you move on, to gain the 'closure'.
But what if you dont want the closure, what if you want to stay in the world where she still exists....where its still a bad dream and you will wake up?

I could never fully explain the sickness that wallows at the bottom of your stomache on a day to day basis that comes from losing a child, but people lose children...it happens...i've unfortunatley come across this more often since losing my child. People gravitate towards each other, to share their losses. And thats good, believe me, it's helpful to have that silence where people can sit and 'just know'.
But it seems to me that we are missing something....other people seem to be able to celebrate these 'would have been' birthday's and send balloons to the sky, to hold other peoples children or to live on through those children they all ready have or for some which is of course beautiful, they have new babies on the way. They get a chance to live again.
Ellie was a scientific miracle, a NHS gift from IVF. And she will probably be the only one. And getting your head round that is tough, when babies are born everyday to those unworthy, unwanted. Its crappy. And I'm not after sympathy. Just wanted to have a moan,  to say 'Hey you know what, infertility is a painful business, and to my lovely friends who are also struggling to get the family they deserve, be brave and amazing  and have hope. Because in spite of everything, I still have hope that I will get to be a mummy again one day. (Preferably before I go grey!!)

Interested in taking part in a sponsored walk?

A lovely Lady from Davenham Ramblers called Denise has been in touch today, she is friends with Gill Bennett, who is Ellie's Great Step Grandmother (complicated family us!).
She is setting up a sponsored walk which will be for Ellie's fundraising and will be doing it on a very special day - the 4th of September, which would have been our beautiful girl's 1st birthday. :'''''-(

The walk will start from Chester train station to the Forest View Inn at Oakmere along the Baker Way.
Sounds like a good excuse for a celebratory pint afterwards!
Dan and I will not be able to attend but for all keen walkers who'd be interested in participating please email denisedavies@uwclub.net.

Thank You x

Introducing Little Miss Ellie - incase you never met....

Some of you never met our beautiful brave little girl. That's why I'd like to share this video I found on my phone last night. It was taken in the middle December, at the hospital obviously. It was a night when Dan had gone home to sleep and I just stayed awake talking and singing to her.  There was a rare moment when she made a little speaking noise too, which might not just be in this clip.It was so painful watching and remembering just what a sweet special little baby she was. At this point she was still quite mobile with her arms legs hands and head...later videos would show a dramatic change in her :-(
We have very few video clips, not sure why really, although we used to try and film her to capture seizures for the doctor and I guess, well, she never really did much...thats what makes these clips so very special. I know she was more than just pictures on this blog, to me she was flesh and blood, breathing and heart beating.

I have loaded a couple of extra ones on there specific days, so there's a challenge for you if you wanted to find them, and if not they will just be a nice addition if you pop back in time.

Preserving the Memories

Just to let you know that Reverand Breffit was very nice.
He has taken all our plea bargaining chips for the Church Council Meeting on the 13th July.
There is one concern regarding the land.  It was given to St Marks Church over 60 years ago with the plan that it was for a new church to be built upon.  The only time a tree we plant for Ellie could become under threat is if builders gained planning permission for the back fields, which noone in Shavington wants!! The Reverand feels that in this instance if builders offered them money to buy the land they might be able to have a new church. Hmmmm.....so what trees can we plant that we could put a preservation order on them....??

Dealing With Grief

No one really wants to talk about the kind of stuff that will rake up bad feelings, remind them of sad times, drag them into darkness, when they are still trying to convince themselves that they are just doing OK, just OK. But when company doctors and company managers suggest the benefits of grief counseling you kinda feel like it's your duty to do this. At 4pm on a Monday. That's your allotted grief time.
No one quite prepares you for the stomach tightening, anxiety ridden feeling as you are heading towards the session. Or the headaches left over after the tear fest agony of yet again going over the finer details of the events leading up to and including death. Assessing the utter numbness that still resides inside you and makes you sick and dizzy. But apparently it helps.
Apparently keeping busy is ok, as long as you are not avoiding the issue.
Remembering each tiny pin prick injection into our beautiful little girls soft pink heel was only the start of the things we are trying to forget continuing to the day her skin became less pink but pale and alabaster. These are things that I have every right to avoid, these are my car crashes and nightmares, these are the reason I still wake screaming down the house and scaring my dear neighbours.
So I'm not so sure about the counseling just yet.
I have an appointment to meet the local Reverand of St Marks Church tomorrow, I need to convince him that Ellie was special enough to deserve a tree planted in her memory across the road in the church field. I may be calling on people to email with a petition if I am unsuccessful.
Wish me luck.