I was born on the 4th of September 2010. On March the 3rd 2011 at six months old I died, because of a rare genetic disorder called Zellweggers Syndrome. I have lived because of people who loved me more than anything else in the whole world. This is my lifestory...
How to get the best out of this blog...
All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Monday, 28 March 2011
Is anyone still reading? I guess you miss her too? :-(
Friday, 11 March 2011
The Last Post - Sharing our Service with you
Music – Hoppipolla by Sigur Ros
We meet here today with hearts full of sorrow, as you come together to support Laura and Dan, to share some of their grief and sadness and most of all to pay tribute to the short but powerful life of beautiful Eleanor Florence Prince.
…A lily of a day
Is fairer far in May,
Although it fall and die that night,
It was the plant and flower of light.
Ellie has been such a shining light, a star in every way: she has shone across continents.
She has touched people’s lives, she has taught people the power of love and she has been loved.
My name is Jan, I’m from the British Humanist Association and I am here to try to help you to say your farewells in a loving and dignified way. The death of a child is so very hard to bear. Instinctively we know that death does not belong at the beginning of life – it belongs with age and weariness, with the closing of a book at the end of a story. It seems like a cruel breach of an unwritten rule when death takes away an innocent baby whose life had only just begun. You may ask what words of comfort or consolation can be found in these circumstances. I can’t bring words to ease your pain, but I can tell you that grief goes hand in hand with love. The pain of losing Ellie is a measure of the love that had grown around her since Laura and Daniel first began to track her progress through the months of pregnancy and then through the 26 weeks of love, devotion, tenacity and clarity with which they parented their little girl. Grief in its many guises – bewilderment, sorrow, hopelessness, guilt, anger – all must be allowed to run its course until, like a river, it empties into a calm sea of acceptance. We have to feel our grief in order to heal.
Of course that acceptance never means forgetting. Humanists believe that what we do in this, the only life we can be sure of, is what makes us live on. Ellie will live on in the future of Dan and Laura’s life together, in the physical things that her fundraising will make possible, in the wonderful blog that has been created around her and in the hearts and minds of all of us who have been touched by her short and courageous life.
Each of you here today will have your own feelings of loss and sadness because Ellie is no longer alive, but your presence here helps to acknowledge and emphasise the value of her life, short as it has been.
Being Parents – Laura and Dan’s words
Being a parent is one of the most important jobs we will ever be called upon to do, although we are never quite prepared for what is expected of us.
In any other relationship we accept the need for some kind of declaration or commitment but we never make any such promises to our children.
We have invited you here to create a special memory and to make a promise to Eleanor that we will never forget her and she will always be in our hearts.
Celebrating Our Little Miss
Eleanor Florence Prince was born into this world a very wanted little girl.
Eleanor was named meaning ‘shining light’ and Florence after her very special great grandmother who passed away before she was born.
Known now, as the infamous Little Miss Ellie, she has had a hard and short journey on earth, battling such a rare and cruel disorder. But through all this her courage and determination to stay with her adoring parents have helped create a strong legacy in her name.
Although she has never been able to smile, her beautiful eyes and those long curly lashes have touched the heart of many; friends, family and strangers alike.
Poem Read by Harry
This place is full of people
Who have come to say goodbye
But no one wants to see you go
And we’re all left asking why
In our pain and tears we share
A heartache that cannot heal
But in our minds we will keep
Memories that no one can steal
We can all feel your hands in ours
And see your loving face
You haven’t gone, we feel you here,
A love we can’t replace
You meant so much to each of us
And in our hearts you’ll always be
I hope you can see how precious you were
To them, to us, to me.
~~~
Your grief in losing Ellie is not just for what has passed, but for what could and indeed should have been in the future. Laura and Dan have been wonderful parents, many of you have seen the evidence of this day by day, week by week. Know this, little Eleanor Florence; you have been loved and will always be loved.
Dan and Lou’s promises to Ellie
We promise to remain positive in our determination to fight through our grief together and respect your memory.
To love each other and be together for the future in order to never let you be forgotten or replaced.
We will remember the good and the bad, the joy and the pain and always know that we did the absolute best we could for you our little girl.
We will remember that special moment you were born and we were just an ordinary family with an ordinary baby but also the times where everything changed and now, when we have become an extraordinary family with an extraordinary baby.
We will promise to remember the simple things too, your tiny fingers curled around ours, in our arms snoring gently, eyelashes flirting and your smiling eyes.
We will remember our beautiful little girl and think about just how much you changed our lives and made us better people by just being here, no matter how brief.
We will remember you, our daughter forever.
~~~
Let’s pause now to allow each of you to reflect on your thoughts of Ellie as we listen to more music that Dan and Laura have chosen.
Music – You are my Sunshine by Elizabeth Mitchell
It will soon be time for you to move on from here. Laura, Daniel and their closest family and friends will stay as we commit Ellie’s physical presence back to the earth, the earth, sky and universe into which she was born. Safe in the knowledge that all she has been to you will remain with you. At the end of the poem, again chosen by Ellie’s parents, I will say Ellie’s name and you are asked to respond.
Poem
These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel's tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies' lazy dance.
I'll let you know I'm with you,
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mummy and Daddy's hearts.
'Cause even though I'm gone now,
We'll never truly part."
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel's tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies' lazy dance.
I'll let you know I'm with you,
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mummy and Daddy's hearts.
'Cause even though I'm gone now,
We'll never truly part."
~~~
Please would you stand for Eleanor’s blessing.
Celebrant: To Eleanor
All: A Shining Light forever in our hearts.
~~~
Laura and Dan will be joining you soon at the Cricket Club, in the meantime you are invited to make your way there, where you well find a very needed cup of hot sweet tea to sustain you.
Laura and Dan are looking after each other. They will need your continuing love and support in the weeks, months and years to come. You being here to share in this ceremony will enhance your place as people who can offer them that support. Your presence here has had huge meaning and significance.
May you find comfort, richness and example in your memories and association with Ellie and her story. May you find support in your love for one another and may you find strength in your hearts.
Music – This Little Light of Mine by Elizabeth Mitchell
Words of Committal
Ellie’s memory is already committed, safe and warm in your hearts.
All that she has been to you and to the wider world that you have shared her with is committed safe to your minds.
So now, in sorrow and with much love, we commit baby Eleanor’s tiny body to become part of the earth, sky and universe that generates all life.
That into which she was born, she will remain forever part of.
Music – Lullaby by Newton Falkner
~~~
In love we shall keep the memory of Eleanor Florence Prince.
May peace, strength and understanding grow from this memory.
~~~
Friday, 4 March 2011
Saying Goodbye
Crewe Chronicle Front Page Wed 8th March 2011
The Sentinel - Page 2 8th March 2011
Nantwich News Online
Funeral Notice
We will be lighting lanterns on Friday night to light up the sky in Ellie's honour at 7pm if anyone else would like to do the same...
The Sentinel - Page 2 8th March 2011
Nantwich News Online
Funeral Notice
We will be lighting lanterns on Friday night to light up the sky in Ellie's honour at 7pm if anyone else would like to do the same...
to take place at
Crewe Crematorium
Friday 11th March at 9.30am
Please wear an item of purple as a tribute
Family Flowers only
Donations on the Day to put towards a tree planting in Ellie's honour
Please NO CHILDREN to be present
-
Polite Request
We appreciate that there may be many people wishing to come and pay their respects to our beautiful darling girl and we welcome you, however please respect that seating is reserved for our close friends and family.
At the end of the service we respectfully request that only those friends and family remain for the committal.
Laura and Dan
Crewe Crematorium
Market Close
Crewe
Cheshire
CW1 2NA
01270 212643
Thursday, 3 March 2011
Thursday 3rd March
I wished Mummy a happy birthday today she was awake at 12am with me and Daddy. We all cuddled on my big girl bed. I was very tired, my breathing and my heart. So I slept and when I stirred a little before seven thirty, Mummy and Daddy were holding my hands, they covered my head with soft wet kisses. I then decided it was time to go. I am going to a special place where I wont be poorly anymore, where I will be able to grow into a beautiful princess who will play and run and sing.
Mummy says that an Angel job is the only one good enough for me, so she made sure I had feathers for my journey, oh and of course, Mowbray too.
(Goodnight beautiful Girl forever in our hearts - 'fly straight' says Daddy. xxx)
Wednesday the 2nd March
Still here, Mummy says I must have unfinished business and she has said that I am categorically not allowed to go anywhere until after tomorrow now as it will be her birthday. They all think that I will do whatever I want to do. That's my perogative now I'm an internet phenomenon (hee hee)
Seriously though, this situation is very tiring. Im lay here on this big girls bed looking all lost. Daddy says I'm on so many cushions I'm like the Princess and the Pea. No peas though. No pees or really poos now as I don't eat anymore. My heart is thundering powering through but I am getting cold feet. I think I am slowly stopping. Mummy said it's the hardest thing in the world to watch, but the new care plan now, it involves love and cuddles and kisses and for the first time in a long time this medicine doesn't have to be administered by a nurse(although I think they would if I asked)it doesn't have to be unlocked and given at specific intervals, I can get this all the time as much as I want to. Don't get me wrong, I still have medicine pumping slowly through into my muscles to help to soothe and relax and take away nasty cold and tummy pain. When things get too much and my cough sneaks back or I just can settle and start to cry they give me special bonus shots that work quickly. Mummy says that these have left my leg looking like a pin cushion which makes her sad. My thigh is quite sore now so the next place is my tummy.my temperature is up and down, my heart rate is up and down , my eyes are flickering around and sometimes sleeping, but mostly not. All everyone can do is wait, for me and I will do things in my own time, my own way, like I always have.
Tuesday 1st March - Purple Tuesday
Pretty Purple Procession |
There was a very mixed mood surrounding me today. It started as soon as I was dressed in my lilac sleep vest and there was a lot of coming and going.
The ward was buzzing outside my room, flooded with staff wearing varying hues of purple from plum and aubergine to violet and purple. Even Dr Burns came to see me with a spotty purple tie. People were spending their money on raffle tickets and bands and trying to win lots of cream eggs.
It has been such an amazing journey so far and look at how much money has been raised in my honour the Train on my door said £10,000 that's lots of money! It's amazing. Mummy and Daddy are so honoured that everyone has been so supportive and got involved
Guess how many eggs and win them all! Make your guess at Ward 17! |
Easter Raffle Goodies at Ward 17 |
It has been such an amazing journey so far and look at how much money has been raised in my honour the Train on my door said £10,000 that's lots of money! It's amazing. Mummy and Daddy are so honoured that everyone has been so supportive and got involved
. I think everyone thinks I am going to die soon. Lots of the staff came in to say good bye, Mummy said to them 'don't say Goodbye, say Manyana!' Because they aren't ready either. Daddy said today was my big party, a special celebration, Ellie Day! they said they wanted me to feel all the love around me and have this special memory of being with me.
I was very restful today, Sleepy but the drugs make me unsettled at times. Mummy calls is space juice. There is just a waiting game now.
.
Monday 28th February
Mummy held me in her arms until 4am until she just couldn't anymore. She had sung songs and told me stories about how her and daddy fell in love and how I was the most special little girl in the whole world to them. She rained on me lots and made small noises in the back of her throat that sounded a lot like puppy dogs. She had Suze making her cups of coffee and toast to keep her awake be cause she said she is making up for lost time and all the future well never have. She eventually woke Daddy to take over because her eyes were sticking together with funny sleep goo. After an hour that was it, the cough came back and so did the injections in my thigh individual shots of morphine to numb this relentless coughing. It helps me Slip into a sleepy place.
All of a sudden it was Monday, the hustle and bustle of the ward was apparent, they drew the door blind and people knocked to come inane were quiet and glum. Becky was looking after me and then Andrea Polkadot too who had turned up yesterday to see me without her uniform. Mummy lay me on the bed with here and we had cuddles. She then gave me a lovely facial, cleansing my skin with fresh saline water and moisturising with a watery glycerine liquid which left my skin all soft and fresh. She brushed my hair and stroked my legs and hands and feet then I had the best cuddles with Daddy.
In the afternoon we all snuggled up in the small bed and lay together for ages until I got too bit anyway. Ray Ray had wedged us in so comfy and blew us all goodnight kisses - at 4 in the afternoon!! More cuddles and more morphine into the night. Everyone is feeling very glum tonight.
Wednesday, 2 March 2011
Sunday 27th February -big changes
Everyone may have been wondering why no posts. Mummy can't type well when she is tired. So what did Saturday night and Sunday look like? Full of coughing and yawning and overall worry and change.
Mummy became concerned that my cough still wasn't leaving. Eventually lovely Dr Ellison arrived to start making decisions about how to help me. As Chloral wasn't working the next action to suppress my cough was morphine this is a really scary drug that when mentioned made Mummy's legs go wobbly, as if she wasn't tired enough. It was her turn to sleep in the flat but wouldn't leave. Daddy and she just stroked my head and soothed me with words because there was nothing else to do. And they cried, because this was the start of a sad day one of many more sad days in a big fat row of sad days and weeks and months.
Sharon kept a constant vigil over me when as soon as an infusion drip was inserted gets this, big word coming, subcutaneously, Pumping, ever so tiny amounts of morphine to help make my cough stop. I had another X-ray that showed that my chest was still not clear, bit here I was stuck with this persistent irritating and downright rude houseguest if I'm honest. It's sore and stingy and makes me hot and sweaty and miserable and rotten. Poor mummy and Daddy they can't really do anything more
Now and they just had to stand there and watch me cough and cough until I was hoarse. Eventually I slept, mummy slept all rumpled on the bed and Daddy slept in a heap squished in the chair for about four hours. And then I coughed again and again, Dr Ellison skipped breakfast, well she must have done as she was here early to see me. My IV was changed and I had morphine injected in my leg and eventually I fell asleep again.
The next frightening thing was that my probe came off my foot and my monitors were all switched off, I am now flying solo. Daddy and Mummy then spent the day sharing me for cuddles on their laps only changing when they needed to get up for a wee. Mummy read me stories about Plop the owl who was afraid of the dark and brushed my hair. Daddy told me secrets and whispered in my ear and they emptied boxes of small soft tissues.Becky left for the day and was sad. She really didn't know if she would see me again. I felt hot but was pale and my breathing very erratic, but had another morphine injection and I slept through until 5am on Mummy's lap. And she just held me and kissed me and snuggled me close. Suze sat with us; Daddy laid awake watching us and reaching out to stroke my hand. There is a real bed here now so we can cuddle if we want to.
Tuesday, 1 March 2011
Don't forget to Wear it Purple for Ellie today, send in any pictures. Also, dont forget Ellie's Auction peices available from to ight at 8pm on ebay!
A special mention and hugs to Lyn, Steve and Charlie today. Xx
A special mention and hugs to Lyn, Steve and Charlie today. Xx
Subscribe to:
Posts (Atom)