Spare a thought

Peroxisomal Biogenisis Disorders, words that regularly haunt my day. These words might not mean much to many people but these words are the reason I lost my baby girl. Anyone who has been following Ellie's blog will know what a tough and emotional journey we have been on and the loss of a child is pretty indescribable, so I wont go there just now.
I am lucky enough to of had support from an amazing bunch of people via Yahoo groups and Facebook who inspired me during the last 8 months and I guess I felt I needed to give these people a little nod. They are all working hard to prepare for a big conference over in the States and have recently launched the Global Foundation of Peroxisomal Disorders website inorder to bring more families together who are affected by this disease.  http://www.thegfpd.org. These families are amazingly brave and special people who devote their lives to their sick children.


As if I'm honest, right now I know I should be still supporting them, and checking out their caringbridge.org care pages to check on their little ones, but I don't, because I can't, not yet.
Just like I can't re-read the early blog entries or look at the thousands of pictures I took of our little girl because it's too hard, it just washes over me, sadness and despair.
So instead I tidy and clean and create, because at the moment thats what grieving looks like for me.
But still, I was brave today and I looked at a post from Sarah Danielson about her little man Jordan and it made my heart soften and brought a smile to my face. So I'd like to share the article with you, if you're interested.
http://www2.highlandstoday.com/content/2011/apr/25/251727/boys-wishes-come-true/news/

Smashing Targets and Tidying Up

We got back from Austalia only to drive to Devon to be reaquainted with our dogs, I would love to say they were happy to see us, Lilly inparticular was following us round everytime we left the room and leaning against us when we were standing or sitting still. We went geocashing on the moors. They liked it. We might try it again!




So then by Sunday here we were finally back home.
I have made sure there is a picture of Ellie in every room, so I can see her when I want to. I had to go into the nursery, it had become a store room really and it seemed a long time since November, when she was last in her cot.
That night comes back to me all the time, the snow outside falling heavily and fast waiting for the ambulance and then those big muddy clumpy footprints on the cream carpet.
Bit by bit things left the nursery to keep her company in the ward and then came back boxed up when they had outgrown their purpose. The pram still looks like new, I never even used the rain cover, as if I would take her out in the rain?!
I sat in amongst a pile of her clothes and blankets desperately trying to smell her again but it was just washing powder. So I gently folded and put away each small sleep suit and outfit, remembering a time she would have worn them. I wont pretend this was easy. But its a process for me, tidying, sorting, the physical process helps the mental one I guess.
Most of her toys have gone now, Ellie and I had chatted at length about which toy should go to each of her little friends.Of course she agreed with me, everytime. Angelina Ballerina got to visit Singapore this month, she definitley made the big time.
Dan had wanted her room to be tidy, so that he could just sit there, when ever he felt the need and he popped his head in to look at what I'd done. But thats all he could manage.He started back at work.
Someone who hadn't kept up to date asked him 'How's the Baby' today. I'm glad I wasn't there but also sorry I couldn't have been for him.


I had an email from Sue at the Ward who handles all the offline donations towards Ellie's Fundraising. Cronkinson's Farm eventually got their Charity night together raising £623 which will go to putting a musical night light on all the babies cots! They also drew the Easter Raffle and the Cream Eggs which has been added to our total. I am so ecstatic that we have crept over £17,464! 
At this point I have to say again huge THANK YOU's to everyone who is continuing to help us make a difference - the money being raised is phenomonal! And it isn't stopping!!
I'd like to mention two ladies in particular who have got separate justgiving sites raising money towards Ellie's plight, Claire Coombs has just hit £500 in donations and Karin Phelan is at £230. This is excellent work girls! Dan will need to step up the the challenge now!!

If anyone else doing the triathlon in May for Ellie can get in touch as I am trying to organise T-Shirts and I need to know numbers and approximate sizes for people, Dave has done me a design and I'm keen to get these ordered asap! Email lou.prince@live.co.uk. xxxxxxxxxxxxxxx

Fundraising News

We havent finished making a difference and neither have you - we are constantly touched by the effort that people are going through to make Ellie's fund such a great success!
Huge thanks to Grandad Adrian who's successful Croquet Marathon will be putting an extra $1100 into Ellies fundraising pot, (700 GBP) I think he suprised people by getting 400 hoops in two hours when he was only expecting 300 - Amazing!!
More thanks to....My wonderful Colleagues at Cadbury's who got together at their Conference and had a huge raffle raising 1275 pounds, (Sorry Aussie puter only has $ symbol!!)
And thanks to Kate and Chris and Charlotte who with Rhytmn time at Northwich and Middlewich and the kind people at Bentley we have had a further 130pounds!

Coming Soon!

Hitting the headlines even in Australia!

 

This Sunday, 10th April join Ellie's Ward walkers for a sponsored prampush around delamere forest - email asap lou.prince@live.co.uk and I will put you in touch with the lovely Nadine who has organised it.

Or if you are a keen Cycling fan, how about joining Dave on the London to Brighton Bike Ride, 1st May? Again, email me if you would like more details and I can put you in touch with him, I believe he is getting T-shirts for this event...posh eh?

Mothers Day

Odd that Mothers Day should fall a whole month after Ellie has passed away. It was reasonably easy to ignore because it isn't Mothers Day in Australia until some time in May. I guess I was trying to ignore it to be honest, like it didn't really happen.
For those of you wondering, we are ok. Getting by. We have spent the last week in Sydney and have walked our feet off. The past few weeks have been full of mixed emotions and many tears. We have found Ellie in everyday, from a song in the Market and a beautiful sunset to a single dayglow star at a friends house and a heart shaped stone on the beach.
I don't know what else to say at the moment. That empty hollow feeling is still there, following us around like a lost puppy dog.
Tick tock, tick tock. Apparently time helps.