Thursday, 13 September 2012

Saying Goodbye

Saying goodbye to little Erin was the hardest thing I have ever had to do. I remember the day of her funeral so clearly. A day I had been planning and thinking about constantly for the week before. I had immersed myself in trying to make this day into a fitting tribute for my beautiful girl. There were so many things I was no longer going to be able to do for her...I would never arrange her christening, throw her a birthday party or shop excitedly for her christmas presents....her funeral had to be perfect. I threw all the love I held for her into organising this one day, spending hours on the internet looking for the perfect songs with words that expressed how we felt and poems that echoed our feelings of love, loss and despair. We wrote a eulogy for the vicar to read, telling those who came about how wonderful little Erin was and about how she had completely stolen our hearts. We wanted everyone to know how proud we were of her- pride that will stay with us forever. I printed out photograph after photograph and found it so difficult to choose which ones should be on display. In the end I took several photo albums with me - I wanted everyone to see how gorgeous my baby girl was - how gorgeous and how brave.

As difficult as saying goodbye to my beautiful baby girl was, I am grateful that we had the opportunity. I am glad that we were able to share our memories with our friends and family - many of whom never got to meet her. I am glad that so many people took the time to come and think about Erin and pay tribute to her short life. She may have only lived for 22 days, but the impact she has had on my life cannot be put into words - she has changed me forever. Although I speak about saying goodbye to her, in truth I haven't really and I never will. She is with me forever, in my heart and in my soul, and I will never be apart from her.

I have spoken before about some of the lovely people I have met on twitter and today I would like to talk to you about some more. You may have noticed the new badge on my blog - I am proud to be a Saying Goodbye Champion. Saying Goodbye are a wonderful organisation run by Zoe and Andy who themselves have suffered tragic loss. They now organise remembrance services around the country to bring people together to remember and say goodbye to the precious babies they have lost. They provide an opportunity for families to think about and remember their babies and honour the memories. Organising Erin's funeral was extremely difficult, but I do appreciate having the opportunity to formally acknowledge her life and share my memories with family and friends. Those who suffer the loss of a baby through miscarriage often do not get this chance. Saying Goodbye Services are for people who have suffered the loss of a baby through any stage of pregnancy, at birth or in infancy. They are an opportunity to stand together with others who share our pain and pay tribute to the babies who we love with all our hearts. Our precious babies who will never be forgotten. To find out more about Saying Goodbye and see where the services are taking place, please visit their website http://www.sayinggoodbye.org/ You can also follow them on twitter @SayingGoodbyeUK

Little Snowdrop

The world may never notice
If a Snowdrop doesn't bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.
The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says that we love you.
(Author Unknown)

Monday, 16 July 2012

Cycling for Erin

On Sunday 8th July, 22 amazing cyclists rode from Manchester to Blackpool to raise money for the Turner Syndrome Support Society in memory of Erin. Among this group was Erin's daddy, grandpa, 3 of Erin's uncles and many of Erin's parents friends - it was a truly wonderful and humbling day. Another of Erin's uncles and her auntie also helped by driving some of our cyclists to Manchester very early in the morning.

The day began at 5:30am with a hearty breakfast for Erin's daddy before our 6:30am meet with 10 of the other cyclists. The remainder would be meeting us in Manchester at 8:00am. The cars were loaded up and we set off about 7:00am. After numerous mobile phone calls upon arrival we finally managed to assemble the group together - meeting under the 'M' of Manchester United outside the stadium shop. Brief introductions followed before the brave cyclists commenced their ride at 9:00am!

Some of the Erin's Gift team at the start of the ride


While the cyclists rode the 62 miles to Blackpool, their respective partners, children and friends began to assemble at the finishing point - by the glitter ball on Blackpool promenade. Luckily it was a beautiful sunny day and we had time for a lovely picnic before our incredible cyclists began to arrive. The quickest of the group, Jonny and Ant completed the ride in about 4 hours - which is amazing. The rest of the riders arrived over the next few hours - exhausted but proud of what they had done. Unfortunately we had one injury to a rider which meant he was unable to complete the ride - however, he has already confirmed that he wants to do it again next year, which is great! It was so overwhelming and amazing to see the cyclists in their Erin's Gift t-shirts and I feel so proud and grateful to each an every one.



Thank you so much to all the cyclists who took parts and to all the drivers who delivered them to the starting point, family and friends who cheered them on and generous people who sponsored them. So far our total is £1830, but with the sponsorship that is still to be collected I think we will have raised over £2000. You can visit the justgiving page here http://www.justgiving.com/ErinsGift

Sunday, 24 June 2012

The Great North Swim

Today is the Great North Swim and one of our friends, Mike, is taking part in memory of Erin to raise money for a cause very close to our hearts - Aching Arms. I have written about the work that Aching Arms do to bring comfort to bereaved parents in previous posts. They give teddy bears to bereaved mothers to let them know that they are not alone or forgotten.

 I received my bear on the 20th February - over 4 months ago. She is called Maisie and was donated by Maisie's parents in memory of their precious daughter in order to give comfort to another grieving parent. Well, in this case, that grieving parent was me and Maisie bear truly does bring me comfort. Every night since receiving her I have gone to bed holding her tightly in my arms and it always amazes me each morning when I wake up and she is still tighly grasped there. I think this shows how much I need her and how much she means to me. I never let go - even in my sleep. Maisie bear has been to the Lake District twice with my husband and I and a few weeks ago even  came on a hen weekend with me. This was the first time I had been away from my husband since Erin's death and I was very anxious about it - but Maisie bear helped ease some of those nerves. She was a reminder of the support I have and the fact that even when it may feel like it, I am never alone.

I have received so much lovely support from friends, family and people that I have never met before since Erin's death, yet I never cease to be overwhelmed and truly grateful for it. Mike's swim this afternoon is going to be tough, wet and cold and yet he is doing it for little Erin. On twitter hundreds of people have retweeted the fundraising page and so far enough money has been raised to send 28 bears to grieving parents in memory of Erin. This is amazing and means so much to us. The thought that our gorgeous little girl can help bring comfort to others who are experiencing the horrendous grief and pain of losing their most precious baby is amazing. In fact, it is what Erin's Gift is all about - our gift to Erin is our fundraising in her name and Erin's gift to those who need it is the money and awareness that we raise. Through Mike's swim, the generous donations of others and the wonderful work of Aching Arms little Erin will be helping other people at a time when they really need it and that means more to me than I can express in words.

Here is Mike's fundraising page - please take a look and donate if you can http://www.justgiving.com/MikeESwim and you can find out more about the work of Aching Arms here http://www.achingarms.co.uk/.

Wednesday, 20 June 2012

T-shirts, mugs and more

I am so excited about the new Erin's Gift products that are now available. You can buy mugs, keyrings, bibs and t-shirts in various designs. The aim of these products is to raise awareness of the work we are doing in Erin's name and to raise money for the wonderful Ronald McDonald House at Alder Hey Children's Hospital. You can buy the products here http://www.littleponypromotions.co.uk/erins-gift-21-c.asp but here is a sneak peak of a few of the products. I love them all!







I really find it quite overwhelming that you can now buys these products - my little girl is really making a difference. Thank you so much for your continued support xxx

Thursday, 14 June 2012

Do Something Amazing......

Logging onto twitter this morning I saw that it is International Blood Donor day. Straight away I knew that this was something I had to get involved in. I have been a blood donor since I was 18, but it was not until little Erin was in intensive care and dependent on the generosity of blood donors to make it through each day that I truly understood just what an amazing thing it is to do.

So today I have made it my mission to try and encourage more people to give blood - every pint donated is so precious, that even if only one person reads this blog entry or sees one of my tweets and books themselves into a blood donor session I will view it as a job well done.

I have seen two sides of blood donation - I have been the donor and I have been the fearful mother of a recipient who required blood tranfusions on a daily basis in order to survive. I am going to tell you a little about each of these experiences.

For me, donating blood is easy. For those of you who have never donated blood, I will tell you what happens. I go online to and enter my postcode. This tells me when and where the next local blood donation session will be taking place. I then book onto that session online - it really is that simple. On the day of the session I turn up and sign in at the desk then sit in the waiting area and drink a big glass of water. If it is your first session you will need to answer some questions to ensure your eligibility to give blood. Details of these can be found on the website.

When my name is called a friendly nurse takes me to a private area and asks me some questions about my recent health. They also take a pinprick of blood from my finger in order to test my haemoglobin levels. If all is okay I am ready to go. I am taken to lie down on a bed, the area on my chosen arm is numbed and the blood is taken - approximately 470ml. Afterwards I am given a drink and a biscuit in the waiting area and am able to book my next appointment for 3 months time. The whole process takes about 45 minutes.....that is all. Just 45 minutes of your time once every 3 months to help save lives. It really is an amazing thing to do.

The other side of blood donation is much more terrifying. I understand that some people are scared of needles and that the idea of donating blood is anxiety provoking, but I can promise you that this is the better side of blood donation to be on. Being on the other side, the side where your life or the life of someone you love with all your heart depends on the generosity of people you have never met giving up 45 minutes of their time every 3 months is desperate and terrifying. Little Erin was on an ECMO machine for the last 2 weeks of her life as her heart and lungs were unable to work on their own. The blood flow through this machine was closely monitored 24 hours a day and Erin required regular blood tranfusions. She also received platelets on a regular basis. We were told that when Erin was better her blood group would be tested again as she had received so many tranfusions that it was possible it may have changed from that which she was born with. As you are aware, tragically Erin never did get better...but many, many patients who receive blood transfusions do and one of the reason they get better is because of the blood they received. Quite simply, it is because of blood donors.

You can find out more about blood donation, where to do it, the eligibility critieria and how it is used here http://www.blood.co.uk/index.asp. I hope you will consider doing something amazing today.

Sunday, 3 June 2012

Making progress....

Once again I have to apologise for not updating my blog recently. Although I have been quiet on here things have been moving along with regards to our fundraising and I am very glad to be able to update you with two exciting pieces of news today!

The venue for our Imagine Appeal charity auction has been booked. It will take place on Friday 19th October at Fylde Rugby Club, Lytham St Annes. It is a truly lovely venue and has a capacity of 150 so we need to start selling tickets soon. All proceeds will go directly to the Alder Hey Imagine Appeal and I hope we can raise lots of money for them. The evening will consist of the auction, a raffle, food, live music, dancing and ultimately raising as much money as we can in memory of our precious little girl. Tickets will cost £10 per person.We continue to receive really generous donations of prizes and will continue to make requests for more over the coming months.

My second piece of news is that the Erin's Gift t-shirts are ready and on sale through the company who made them. They cost £10 each and proceeds will go to Ronald McDonald House Charities. I really love them and hope that you will too. There are four designs in total - two for women and two for men. Please take a look and consider buying one, not only to raise money for a wonderful cause, but also to help spread the word of what we do as Erin's Gift http://www.littleponypromotions.co.uk/

If you do buy a t-shirt I hope you will wear it and tell people about the work that we are doing in Erin's name. If possible please ask people to google Erin's Gift to take a look at my blog and also to follow me on twitter @ErinsGift. Thank you

It seems poignant to me these two important developments in our fundraising have occured over the last few days as two days ago marked 6 months since Erin passed away. This makes me feel so sad and I can't really believe that so much time has passed. I feel in many ways as though my life has stood still and been on pause since I lost my little girl. I am certainly not the same person I was before she died and my life is far from how I thought it would be now. I thought I would be spending my days watching little Erin grow, instead I spend them tweeting in her memory and trying to raise awareness of Turner Syndrome and the charities who helped us. These developments help me to realise that although it may feel like it at times, my life has not stopped. Erin was never given the chance to make the impact on the world that I know she could have done, but we are continuing to make things happen in her name. I am proud to say that Erin's Gift has now raised over £6500 for some amazing charities and it is still just the beginning.....

"There is no foot too small, that it cannot leave an imprint on this world"
- Unknown 

Friday, 11 May 2012

How things could have been....

I'm sorry I have not blogged for a while. I have been busy organising things for our auction which is taking place in October. We will be raising money for the wonderful Alder Hey Imagine Appeal - a charity close to our hearts. Erin was admitted to Alder Hey Children's Hospital when she was 1 day old and she spent the rest of her life in their kind and loving care. I am hoping that we can raise a lot of money for them. We should have the venue confirmed soon and continue to get amazing donations of prizes from twitter.

Often when I have been organising things since little Erin passed away, I am struck by how things could have been and the things that I should be organising in their place. This first occured when arranging Erin's funeral which took place on 12th December 2011. I spent hours and hours trying to find the perfect hymns, the perfect songs and the perfect readings. I felt like there were so many things that I was no longer going to be able to do for my most precious little girl that I had to make her funeral the best that is possibly could be. I poured all the love and pride that I felt for her as well as all the anguish and torment that I felt at her death into the planning of that day; all the time thinking that this was so wrong - that no one should have to plan their child's funeral. I couldn't help but think that I should be planning her christening instead - this was the normal thing for a new parent to do and was something that I had thought about when pregnant. Where would we hold it, who would do the food, what kind of outfit would Erin wear......I never got to make those decisions. Instead of organising a christening to celebrate the birth of my beautiful baby girl, here I was organising her funeral. It all felt very wrong and so very cruel.

I have been struck by similar thoughts whilst organising the auction. It is to take place in October, shortly before Erin's first birthday. I can't help but think that this is what I should be organising instead - a party to celebrate the first year of my gorgeous girl's life. Instead we will be raising money in her memory; money for a truly wonderful hospital who help thousands and thousands of children every year. I will always wish that we could be doing this fundraising with little Erin in our arms, but as we cannot we will do it proudly in her name - as ever inspired by her wonderful spirit, her amazing bravery and our immense pride at being her mummy and daddy.

Monday, 30 April 2012

Feeling supported

It is now almost 5 months since Erin passed away - she would be coming up to 6 months old. I see pictures of babies born around the same time and wonder what Erin would be doing now. Would she be able to roll over? Would she be babbling away? How big would she be? I will always wonder these things - all the little details about my beautiful daughter that I will never get to find out. Some of them are the most basic things, like her eye colour. Her eyes were a deep dark blue when she was born, but maybe they would have changed? Her hair was a dark blonde, just like daddy's - maybe it would have got lighter? It hurts that I will never know these things. As grateful as I am for the time that I got to spend with little Erin and the opportunity I was given to find out some things about her, I am also angry and desperately sad at the things I will never know. I will always be left wondering.....

So it is almost 5 months since we left Alder Hey with empty arms and broken hearts. I have written before about the lovely staff that cared for Erin whilst there, but today I received  phonecall that has reminded me of the other wonderful staff we came into contact with. These are the team that no parent wants to know - the team that support parents following the death of their child. They rang to ask how we were doing and whether there was anything that they could do to help us. We are being well supported by our local hospital, where Erin was born, so do not really need anything from them - but it was so lovely that they asked. The grief of losing a baby can be so lonely and make you feel so empty inside that it is nice to know that we are being thought of.

The job they do must be so difficult, but it is so important. The day following Erin's death is a bit of a blur to me - we were taken by the bereavement support worker to the town hall where we had to register Erin's birth and death in the same appointment. We were given a memory box to put Erin's things in and helped take foot and hand prints of our darling daughter to keep forever. These are now among my most treasured possessions and are something that I would never have thought to ask for. Just the other day I began to panic that I couldn't remember what Erin's feet looked like or how long her toes were. Then I remembered that I had these prints and I was able to go and look. I have even had them made into a necklace which I wear always.

These things are so important, but in the depths of their grief a parent is in no position to think of them.  I really admire the work of the bereavement support team and am so grateful to them now that they helped create some momentos of our precious girl that will stay with me forever. The importance and meaning of what they do can never be underestimated.



When you have your baby in your arms, footprints, handprints and locks of hair may not seem like much. When you no longer have your baby, they mean everything!

Sunday, 22 April 2012

Aching Arms

I am really happy to tell you about our latest fundraising effort - well, I say our, but really it is all down to a friend Mike who is taking part in the Great North Swim in June and asked if he could use it to raise money for Erin's Gift. Of course I said yes without hesitation and knew immediately which charity I wanted him to swim for - Aching Arms.

I have written about Aching Arms at length in a post before. They are a wonderful charity set up by the lovely Leanne following the loss of her son James. They aim to bring hope and comfort to bereaved mothers' aching arms by giving them a teddy bear to hold. Each bear is given in memory of another precious baby's life lost too soon and is a gift from one mother to another. I was given a beautiful bear in memory of baby Maisie and each and every night I fall to sleep holding Maisie bear tightly in my arms.

My previous post about how much Maisie bear and the work that Aching Arms do can be found here http://erinsgift.blogspot.co.uk/2012/02/today-i-got-received-some-comfort.html

I really hope Mike is able to raise lots of money through sponsorship for his swim. For each £10 that is donated another bear in memory of Erin will be given to a mother needing comfort. Of course, the bear will never replace the precious baby that has been lost, but that is not the aim. The bear will be something for the mother to squeeze tight and hold as she cries and thinks about her dearly loved and much wanted baby who is no longer in her arms. It will remind her that she is not alone...that somewhere out there, there is another mother who has experienced similar loss and who has given this bear to her with the greatest love she has....the love for her most precious child.

Please take a look at Mike's fundraising page and donate/share it if you can http://www.justgiving.com/MikeESwim. You can also sponsor him by texting ERIN62 followed by £1, £2, £3, £4, £5, £6, £7, £8, £9 or £10 to 70070. Thank you.


"While I sleep, I dream of you, and when I wake,
I long to hold you in my arms"



Sunday, 15 April 2012

Honoured

I was honoured to be asked to write a guest post on another blog this week, so instead of writing one on here today I thought I would link you to that http://notevena.blogspot.co.uk/2012/04/erins-gift-raising-awareness-of-ronald.html

If you have time please have a look at this blog - 'Not Even Bag of Sugar' - beautifully written by Kylie. You can also follow her on twitter here @kykaree.

I will also leave you with this beautiful poem, given to me by a friend. I am unaware of the author, but it is has brought me much comfort, although I cannot read it without tears. When you get to spend such little time with your precious child, it is hard to feel like you did enough for them and are truly their mother. I hope these words bring comfort to other mummys who may at times struggle with these thoughts.

What Makes A Mother

I thought of you and closed my eyes
And prayed to God today,
I asked, "What makes a Mother?"
And I know I heard him say:
A Mother has a baby,
This we know is true

But, God, can you be a mother
When your baby's not with you?

Yes, you can, he replied
With confidence in his voice,
I give many women babies,
When they leave it is not their choice.
Some I send for a lifetime,
And others for the day,
And some I send to feel your womb,
But there's no need to stay.

I just don't understand this God,
I want my baby here.

He took a breath,
and cleared his throat,
And then I saw a tear.
I wish I could show you,
What your child is doing Here...

If you could see your child smile
With other children and say,
"We go to earth to learn our lessons
of love and life and fear,
but my mommy loved me so much
I got to come straight here!"

I feel so lucky to have a Mom who had so much love for me,
I learned my lessons very quickly,
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep,
On her pillow is where I lay.
I stroke her hair and kiss her cheek,
And whisper in her ear,
"Mommy, Please don't be sad today,
I'm your baby and I am here"

So you see my dear sweet one,
Your children are okay.
Your babies are here in my home,
And this is where they'll stay.
They'll wait for you with Me,
Until your lessons there are through,
And on the day that you come home,
they'll be at the gates waiting for you

So now you see
What makes a Mother,
It's the feeling in your heart,
It's the love you had so much of

Right from the very start.

Thursday, 12 April 2012

Masato Fashion Show

As you are probably aware, we are organising an auction to raise money for the Alder Hey Imagine Appeal, to take place in October 2012. In order to collect items to sell I have been sending requests via twitter and have been overwhelmed by the response. We are in the process of setting up a website on which we have a page dedicated to all the generous businesses and individuals who have donated.

One person who got in touch was Mike who works with the fashion designer Masato. He had seen my tweets and said that Masato would like to donate one of his dresses for the auction. Needless to say I was totally gobsmacked and amazed. Mike said that my husband and I could attend their fashion show in Manchester to meet Masato and collect the dress. Well, I had never been to a fashion show before so was quite nervous, but yesterday we we went, we saw, we collected the dress and we had a lovely but emotional day.

We met Masato, Mike and some of their team at their hotel in the afternoon and despite being nervous, were put at ease by how lovely they were. Masato gave us this gorgeous dress and their photographer took some photos.


I am so excited that we are going to be able to auction it to raise money for Alder Hey -  it is a size 12 for those who may be interested!

We were also surprised by Helen and Joan, the lovely ladies from Latimer Couture jewellery (http://www.latimercouture.com/) . They explained that they would like to donate one of their beautiful necklaces to our auction - cue my first tears of the day. Unfortunately I don't think the photo below quite does justice to just how beautiful the necklace is, but hopefully I will be able to take some better ones before the auction.


We were then given VIP tickets to Masato's show which guaranteed us front row seats and a goodie bag. It was wonderful - the dresses were absolutely gorgeous and I would really recommend everyone to have a look at this wonderful designer's work (http://www.masato.co.uk/)

I am so grateful to Mike, Masato, Helen and Joan for their extremely generous donations to our auction. I am sure that they are going to raise a lot of money for the Alder Hey Imagine Appeal - a really wonderful charity. I would also like to thank them for being truly lovely to us and treating us to an amazing day out.


My husband and I arrived home that evening exhausted after an exciting but poignant day.It had been the first day since Erin was born that I got up, put makeup on and made an effort with my appearance. It had not felt right to do those things before, but yesterday it felt okay because it was all about Erin. All the fundraising we do is in her name, so going to Manchester and meeting these wonderful and generous people was for her. I hope I did her proud.

"How beautiful a day can be
When kindness touches it"
~ George Elliston

Sunday, 1 April 2012

I miss you Erin

Today is 4 months since Erin passed away. A friend asked if I wanted to talk about the things I miss about her and I thought this may be a good topic for my blog. A chance to reflect on and think about my beautiful little girl.

I miss so many things about the first week of her life, before she had her operation, when she was on K2 at Alder Hey hospital. I miss watching her stretch her entire little body and wriggle around as she was waking up from a deep sleep. I miss the way she used to gulp down her milk as fast as she could and then clamp her mouth tightly shut when she had drunk enough and refuse to  let the bottle pass her lips again. I miss watching her sleep - it seemed she could get comfortable in any position. I miss it when she pursed  her lips in her sleep and pulled other funny faces. I miss our cuddles - I miss our cuddles so much. I miss holding her against my chest and snuggling her close. I miss stroking her soft hair and watching her sleep, her cheek squashed against my shoulder. I miss resting my cheek on the softness of her head and feeling totally at peace, knowing that this felt totally right and was what my life was all about - caring for my beautiful daughter. I miss jumping out of bed in the morning, even though I had only had a few hours sleep, because I was going to spend another day with my amazing little girl. Jumping quickly in the shower and getting dressed as quickly as I could - I never once dried my hair with a hairdryer during Erin's life because that would just be wasting time. I could not wait to be by her side and every minute was precious. I miss getting up in the morning and saying excitedly to my husband, "come on, lets go and see our little poppet". I miss changing her as she wiggled around on the mat - trying to work around the wires and monitors. I miss choosing a babygrow for her to wear and dressing her proudly. I miss everything!

The next 2 weeks were spent with Erin in ICU following her operation. This was a very different time as she was critically ill and there were no cuddles, or dressing or stretching anymore.....but despite this, there was still hope. There was still a skip in my step as I rushed down to the ward in the morning, hoping that today would be the day when she could come off the ECMO machine. There were still tremendous feelings of pride as I sat by her side, whispering words of comfort in her ear, stroking her hair and holding her hand. These feelings of pride will never leave me.

And now, there are things that I miss that I never even got to do. I miss having the opportunity to sit in the rocking chair in her nursery with her and sing her to sleep. I miss having the chance to take her for walks in the sunshine and visit daddy during his lunch break at work. I miss the fact that I never got the chance to introduce her to most of my friends and family and that she never got to enjoy all the cuddles she would have had. I miss getting out of bed full of hope and joy in the morning.......

When we returned home from hospital without Erin one of the first things I did was write down all the wonderful things about her - the details of her hair and her weight and the funny little mannerisms that she had. I was so terrified that one day I may forget them and I never wanted to forget anything about my precious little girl. Now I know that I will never forget these things, but what I worry about is that I will forget how these things felt. It is 4 months on and I am struggling to remember just how it felt to hold my baby girl close and this scares me, because my memories are everything...they are all I have.




"When someone you love becomes a memory, the memory becomes a treasure. "
~ Author Unknown

Thursday, 29 March 2012

A Mother's Instinct

I came across a lovely quote on the internet yesterday:

"When a baby is born, it's a mother's instinct to protect the baby. When a baby dies, it's the mother's instinct to protect their memory."
- Unknown


This really sums up what I am trying to do with Erin's Gift. Of course it is amazing that we are able to raise the money we are raising for some great charities and awareness of Turner Syndrome, but what makes it even more special for me is that we are doing it in Erin's name. We are saying thank you to the organisations that helped us by helping them to support other families too, all in memory of our beautiful and precious little girl. I had not thought of it before, but this truly is my instinct. I find it  hard to contemplate going back to life before Erin because I feel so different now. I am a mummy, even though my baby girl is no longer with me. I spend hours each day tweeting about little Erin and sending emails regarding our fundraising because it is my instinct to do this. I need to spend time thinking about Erin, writing about Erin, telling people about Erin because the thought of her being forgotten or of her life not meaning anything terrifies me.

One thing I really hate now is being bored. I cannot stand having nothing to do because it just reminds me of how busy I should be. I am able to lie in, but this makes me sad because I know I should have been woken by little Erin crying for a feed. I am able to watch my favourite TV programmes without distraction, but this makes me think about the fact that we have no need for baby monitors on the side of the chair, listening out for Erin's cry. Everyday ordinary things now stand out because they highlight this huge emptiness I now have in my life. I do the weekly shop and I feel sad that I am not parking in the mother and baby spaces; that I am not struggling to push a pram and carry a basket; that I am not rushing around doing it as fast as I can because I need to get home for Erin's nap.

In some ways it seems strange that I can miss things I have never even done, but I do miss them; I miss them terribly. I had imagined them so vividly and with such eager anticipation when I was pregnant - I couldn't wait. Now when I hear mothers having a moan about their lack of sleep, or the fact that they are unable to go out somewhere because they cannot get a babysitter I find it really difficult. I know it is understandable for them to moan and that most parents do on occasions and I don't blame them for this, but I know that their situation is so much better than mine. I know that I would give anything to be sleep deprived and missing out on the social event of the year if it meant that I had little Erin in my arms.


This fundraising really is my instinct - it is keeping Erin's memory alive. Maybe this explains why I am able to do things that I never would have imagined myself doing before - writing this blog; tweeting celebrities; asking people I have never met before for donations to our auction. I feel like I can do anything when it is for little Erin - and that anything is possible!

Sunday, 25 March 2012

British Summer Time....

Well the clocks have changed to British Summer time, the sun is shining and it is a beautiful day. A beautiful day that makes me feel very sad. Sad because I want to be out enjoying the sunshine with my lovely little girl, but instead I am inside the house working on our fundraising plans. I do get little bits of joy and excitement from the fundraising - when a celebrity says they will donate an item to our auction or a new donation is made on our fundraising page it feels good for a second. But, then I remember why we are doing it and the fact that we are raising this money in memory of little Erin. I so wish we were raising it in celebration of her recovery from her heart operation and in celebration of her life.

Over the last week I have started making plans for our auction which will take place on October 20th. I don't really know what I am doing, having never done anything like this before - but hopefully it will come together okay. Yet again I have been overwhelmed by the support of people on twitter to help me with this. I have had numerous offers of items for the auction, which is wonderful. We are going to set up a website soon for Erin's Gift on which we can list all the items that will be included and the wonderful companies and individuals who donated them. I would also like to see if we can find a band/singer who would be willing to play and an auctioneer. The auction will be raising money for the Alder Hey Imagine Appeal. Alder Hey is the biggest children's hospital in Europe and they treat over 250,000 children a year. It really is a wonderful charity to support. I will keep the blog updated with the items for auction and how to get bid/get tickets for the event.

Meanwhile, my husband is well on the way with his training for the Manchester - Blackpool bike ride on 8th July, raising money for the Turner Syndrome Support Society. You can view the justgiving site for this here http://www.justgiving.com/ErinsGift. Alternatively you can sponsor the cyclists and support women with Turner Syndrome by texting ERIN61 followed by £(amount) to 70070.

Finally, our fundraising for Ronald McDonald House is ongoing and the justgiving page has reached  £6050 http://www.justgiving.com/Erin-Clancy. This is wonderful - it costs them £25 a night to support one family. The money we have raised in memory of Erin so far will pay to support a family for 242 nights, which is really great and will really make a difference. I have tried before, but it is so difficult to express quite how much this support means to a family when their child is seriously ill in hospital - it is invaluable! You can donate to support Ronald McDonald House by texting ERIN60 followed by £(amount) to 70070.

Once again I thank you all very much for your continued support of Erin's Gift - it means a lot to me.


"I'll love you forever,
I'll like you for always.
As long as I'm living,
My baby you'll be"
- Robert Munsch

Thursday, 22 March 2012

Rain will make the flowers grow

In February I mentioned that a lovely lady, Beth , that I met on twitter had agreed to design a logo for Erin's Gift. Well the logo is now completed and I love it. It perfectly encompasses what I wanted it to and what Erin's Gift means to me.



I had asked Beth to design the logo around the concept of 'rain will make the flowers grow'. For me this is what Erin's Gift is all about. I am devastated about the loss of my beautiful daughter - about the fact that she will never grow up, will never smile or laugh, will never walk or talk and will never become the amazing woman that I feel sure she would have been. I am devastated that I never got the chance to be the mummy to her that I so wanted to be and that she never got the chance to fully experience how wonderful a daddy my husband is. There are so many things about which I am incredibly sad and so many things about which I cry.

I feel as though through Erin's Gift we are trying to turn these tears into something good. In truth, we will never raise enough money or awareness to make what has happened good - but this fact will keep  me going, because our work with Erin's Gift will never be done. We will never reach an amount that is good enough, simply because such an amount does not exist. Erin's life and everything that Erin gave us is worth too much.....but that will not stop us from trying.

Therefore, put simply, Erin's Gift is a way for us to use our tears to make something beautiful - in this way the rain will make the flowers grow.

Thank you so much Beth for designing our logo. I really love it and appreciate the hard work that you put into creating it. Please find her on twitter @littledoers - as you can see she is a lovely and talented lady.

“Don't be ashamed to weep; 'tis right to grieve. Tears are only water, and flowers, trees, and fruit  cannot grow without water. But there must be sunlight also. A wounded heart will heal in time, and when it does, the memory and love of our lost ones is sealed inside to comfort us.” 
- Brian Jacques

Sunday, 18 March 2012

Mother's Day

Is there a day more poignant or more sad than Mother's Day when you no longer have your darling mother by your side and your precious daughter in your arms? I am not sure there is. As a daughter or son, Mother's Day is a day to celebrate and spoil your mother. As a mother, Mother's Day is a day to be spoiled and celebrated. For me this year Mother's Day is a day to remember my daughter and my mum and all they gave me. I visited their graves and took flowers - I hope that wherever they are, they are together.

Since Erin passed away and we have started Erin's Gift fundraising in her memory, I have been given many kind compliments. Although these are lovely to hear and I appreciate them, I also feel undeserving. I am so glad that we are able to raise money and awareness of some wonderful causes that helped us, but there is also an element of Erin's Gift which is just me trying to be the best mummy I can possibly be in the most horrendous of circumstances. I will spend the rest of my life talking about Erin, sharing her photo and fundraising in her name because I so desperately want to keep her memory alive. Her life may have been brief in days, but in terms of all she gave me and the love I feel for her,  her life was astronomical. She will always be my daughter and she will never be forgotten. I am and always will be her most loving mummy. The power of a mother's love is so strong that absence cannot dent it, not even a little bit.

If I am to deserve any compliments on the mother I am trying to be, I truly believe that this is due to the wonderful mother I was lucky enough to have. A mother who always put her children first, who showed enthusiam and encouragement for everything her children did and who never made us think that she didn't love us. A mother who was taken too soon and who is missed every single day. When she died I knew that in the future sad and difficult times would always be even more sad and difficult and that happy and joyful times would never again be quite so happy and joyful as they could have been. The last 5 months have proved this to me. I wish I could have shared my joy at becoming a mummy with my mum and I wish I had her here now to comfort me in my grief. She was truly a wonderful woman and an amazing mum.

"Mothers hold their child's hand
for a moment and their
heart for a lifetime"
- Unknown

Monday, 12 March 2012

Cycling for Turner Syndrome

I felt a little lift yesterday as plans got underway for the sponsored bike ride in memory of Erin. On July 8th some lovely cyclists are going to take part in the Manchester to Blackpool bike ride and collect sponsorship that will go to the Turner Syndrome Support Society. I have written previously about how valuable this charity is. They provide support and friendship to women with Turner Syndrome and their families. They also liaise with medical services and raise awareness of the condition. This is much needed. It is hard to believe that I had never heard of Turner Syndrome 12 months ago, but now it has taken my baby girl from me and changed my life completely.

The presentation of Turner Syndrome can vary between women. For Erin, we had been told that it would result in her being short in stature and she would need to have regular growth hormone injections throughout her life. She would also have been infertile and may have experienced some difficulties with learning. We had also been warned that she may have a congenital heart defect - although it was not thought this would be too serious. Tragically this heart defect took Erin's life. We had never expected this and are now left trying desperately to keep her memory alive and say thank you to the amazing organisations that helped us.

So far 11 cyclists have signed up for the bike ride and about another 10 have shown some interest, which is fantastic. I have created a justgiving page here http://www.justgiving.com/ErinsGift I have chosen a target amount of £1500 - it would be amazing if we could reach that. My husband has already been out on some training rides. I don't think I will take part in the ride - I like to see myself as 'team manager'. Hopefully I will be able to promote the fundraising page on twitter and get some sponsorship for the cyclists. I also need to have a think about transport on the day and maybe getting some Erin's Gift t-shirts - that would look great.

Once again I am moved by the generosity and support of friends and family. I really do appreciate the time and effort they are taking to help us raise money in memory of Erin. It means a lot to us.

Friday, 9 March 2012

4 months and counting...

Erin would be 4 months old today. I miss her so much. I seem to spend my life counting now - counting the days since she was born, the weeks since she died, the months since her operation....most days seem to be another milestone, another date that we just need to try and get through.

We went back to Alder Hey Hospital two days ago to meet with the doctors involved in Erin's care. As we have come to expect they were lovely. They talked through Erin's care, answered our questions and asked us how we were doing. I am not going to go into details here, but as expected the reasons as to why Erin did not recover after her operation are not clear. She fell into the minority - the vast majority of babies with Erin's condition do survive. Erin did not - we have to try and come to terms with that.

I was hoping for a reason - something that would tell us why she had died, why our beautiful baby girl was taken from us after only 22 days, but in truth I don't think there would ever be a reason that would explain this to us. There could never be an answer to the question 'Why?' that would satisfy me. It is not fair. I will never think it is fair. I will never understand why Erin was not given a chance.

Cuddling with Erin - my idea of heaven

You may have noticed the new badge on my blog to the right - I got voted into the Top 25 Most Inspiring Mom Blogs. Thank you so much to everyone who voted. Although I have detracted from the theme today, this blog is intended for talking about the amazing charities I have come across over the last few months. Hopefully, being in the top 25 will increase the visitors to my blog and therefore the amount of awareness and fundraising that I am able to achieve for these charities. I am very grateful - thank you.

'Before you were conceived I wanted you.
Before you were born I loved you.
Before you were here an hour I would die for you.
This is the miracle of love.'
- Unknown

Friday, 2 March 2012

Helping parents feel like parents

I have not posted for a few days. Yesterday marked 3 months since our lovely little Erin was taken from us and it has been difficult. Writing this blog is hard and I have to feel 'up' for it. Today, though, I want to share with you some information about another wonderful charity I have come across on twitter.

Erin is our only child so everything about being a parent was new to us. We didn't have a lot of experience in dressing tiny babies or changing nappies and as all parents will know, it is a steep learning curve, but one we were very excited about. Erin was transferred to Alder Hey hospital straight from the hospital in which she was born and immediately put on intravenous medication and several monitors. This meant that from when she was about 28 hours old she was permanently attached to a number of machines. As I am sure you can imagine, this made changing her clothes far more difficult - especially for us as new parents who had not even had chance to fully master changing a wriggly baby without the wires.

This meant that we always had to ask the nurses for assistance when Erin needed her vests changing, as they were able to temporarily disconnect her from the machines. One of the most difficult aspects of being the mummy of a new baby who is unable to leave hospital is feeling so out of control. I wanted to do everything I possibly could for my precious daughter. I wanted to feed her, hold her, reassure her, take care of her.... I wanted to take her home and be a 'proper mummy'. I couldn't do all these things. At no point in Erin's life was I ever alone with her. I was her mummy yet I was never in sole charge of her - there were always other people making the big decisions. This was very hard and I found it very upsetting that I was not even able to change my daughter's clothing without asking for assistance.

Then, on about our 4th day at hospital my lovely sister brought us a present - some bodysuits she had found with velcro on them which were designed for babies in hospital. They were brilliant and they made such a difference - we were now able to dress our lovely little girl all on our own. When she was sick or had a particularly dirty nappy or on the occasions when she would do a huge wee on the changing mat when we were changing her nappy and it went all the way up her back (only happened once) we were able to change her clothes without asking for permission and help. This may seem like a small thing but it wasn't - it was huge. It made a very sad new mummy and daddy feel like a real and proper mummy and daddy and I am so grateful for this. When you only have 22 days with your most precious and beautiful little girl, these seemingly small things make all the difference - they really matter!

Given the difference that these baby-grows made to us, I was happy to come across a charity called Pop 'N' Grow on twitter. They make baby-grows with special poppers on the arms to allow easy access to cannulas/tubing for babies in hospital. As well as making it easier for parents to dress their own babies, these baby-grows also mean that babies who may not otherwise be put in clothing can be - helping to keep them warm and bringing them comfort. Pop 'N' Grow aim to supply all NICUs in the UK with their own stock of these special baby-grows. You can find out more about them here http://www.popngrow.co.uk/. Please take a look and support them if you are able.

Monday, 27 February 2012

Fundraising Update

Today I thought it would be good to update you on the fundraising progress and plans we have in place so far and a reminder of the reasons why we are fundraising.

Ronald McDonald House
I am continuing my twitter campaign to raise awareness and hopefully funds for the wonderful work that Ronald McDonald House do. Yesterday we reached £5400 on the justgiving page which is just amazing and totally beyond what I ever could have imagined we would achieve http://www.justgiving.com/Erin-Clancy. This amount will help them provide accommodation and support to the family of a seriously ill child for 216 nights. This is 216 nights where a family somewhere who are going through one of the worst times of their lives will have one less thing to worry about - allowing them to focus more of their energy and strength on supporting their child to hopefully recover. I honestly can't understand why Ronald McDonald House are not better known - I have lost count of the number of parents who have contacted me on twitter to say they don't know how they would have coped without their support. Hopefully, through twitter, we as Erin's Gift have enabled a few more people to learn about their wonderful work.

The Turner Syndrome Support Society (TSSS)
We are in the initial stages of putting together an Erin's Gift team to complete the Manchester - Blackpool bike ride in July. So far we have about 12 confirmed riders and a few more possibles, which is amazing. All will be collecting sponsorship for the TSSS so hopefully we will be able to raise a lot of money for this very valuable cause. One of the scariest things upon learning of Erin's diagnosis of Turner Syndrome was realising that it seemed very unheard of. I found great comfort in knowing there was an organisation like the TSSS who would be able to provide support and friendship to both Erin and ourselves as her parents.

The Alder Hey Imagine Appeal
I have previously written in length about the brilliant care given to Erin by all the staff we encountered at Alder Hey Children's Hospital. At Erin's funeral donations made by family and friends were split between Ronald McDonald House and the Intensive Care Unit at Alder Hey. Now we are hoping to raise more money for them throughout 2012. Our first event is yet to be fully organised, but it is likely to take place in April and involves a generous local hairdresser who has agreed to do some haircuts in return for donations. Our second event is going to take place in October and is going to be a charity auction; this will be our biggest fundraiser of 2012. I am currently in the process of formulating a list of local and national businesses to write to for items, as well as celebrities and football teams. Already on the first day of planning a generous tweeter donated two amazing items to us. So far this event feels very daunting and scary to organise, but I am hoping that we have given ourselves enough time to make it a real success.

There are a number of other charities I am becoming aware of through twitter that I hope we will be able to fundraise for in the future as well. As always, I am inspired to do this by my beautiful daughter, Erin. The bravery and strength she showed throughout her life amazed me and I couldn't be prouder of her. The effort and time I put into fundraising in memory of Erin is my gift to her and the money and awareness we manage to raise is Erin's gift to those who need it.

Thursday, 23 February 2012

“A quotation is a handy thing to have about...” - A.A. Milne

Today is 12 weeks since Erin passed away and I honestly can't believe it - 12 weeks since I last held her in my arms and cuddled her. My husband and I took a walk down to the beach and wrote her name in the sand - I hope she was able to see it.



Today has been difficult and so I am going to detract a little from the theme of the blog and take some time to think about little Erin and all she gave me. To do this I would like to share with you some quotes I have found over the last 12 weeks which have brought me comfort. Sometimes these quotes seem to sum up exactly how I am feeling, but put my thoughts much more elequently than I could ever express myself.




“If ever there is tomorrow when we're not together... there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”
A.A. Milne






"When someone you love becomes a memory, the memory
becomes a treasure."

- Author Unknown


"An Angel in the book of life wrote down my baby's birth. And
whispered as she closed the book "too beautiful for earth."
- Author Unknown









“I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.”
A.A. Milne

"A Thousand Words Can't Bring You Back, I Know Because I Tried
And Neither Can a Million Tears, I Know Because I Cried."
- Author Unknown







“If there ever comes a day when we can't be together, keep me in your heart. I'll stay there forever.”
― A.A. Milne

"As Long As I Live You Will Live
As Long As I Live You Will Be Remembered
As Long As I Live You Will Be Loved"
- Author Unknown






"There is no foot so small that it cannot leave an imprint on this world"
- Author Unknown

"The mention of my child's name may bring tears to my eyes, but it never fails to bring music to my ears. If you are really my friend, let me hear the beautiful music of her name. It soothes my broken heart and sings to my soul."
- Author Unknown






"The best and most beautiful things in the world cannot be seen, nor touched,
but are felt in the heart" 
 - Helen Keller

"Loved with a love beyond telling,
Missed with a grief beyond all tears."
- Author Unknown

Tuesday, 21 February 2012

Our 'home away from home'

I think it is about time I told you in more detail about the wonderful support given to us by Ronald McDonald House. When we first considered the idea of Erin's Gift, Ronald McDonald House were the first charity that we wanted to raise money for. We wanted some way to try and thank them for the incredible kindness they showed to us and trying to help them help other families seemed like a good way of doing this.

Little Erin was transferred to Alder Hey Children's Hospital when she was 27 hours old. I was unable to go with her intially due to my own medical needs and it was 9 hours before I was able to join her there. This was 9 hours of being 60 miles away from my precious baby girl and it was horrendous. When I finally reached her and was able to hold her in my arms again I knew that I couldn't bear to be apart from her like that again. Therefore, it was an incredible relief to find out that a charity called Ronald McDonald House could provide us with free accommodation on site at Alder Hey whilst Erin was a patient there.

Our first night at Ronald McDonald House is a bit hazy - I was still in shock at what had happened and the fact that Erin was most probably going to require heart surgery. I remember my husband showing me where our room was, with our private bathroom. We also had our own space in the freezer and the fridge and a secure cupboard in which to keep our groceries. I was amazed and very grateful. I had never heard of Ronald McDonald House before and it just seemed so incredible to me that such a charity existed. I honestly cannot begin to imagine what we would have done without them.

The nursing staff caring for Erin were always very kind to my husband and I and encouraged us to return to Ronald McDonald House at night to get some rest. I have to admit that not much sleeping happened, but generally we would return to our room for around 7 hours at night. Leaving Erin at these times was hard, but we understood that we needed to keep ourselves as strong as possible for her and the potentially long road that we had ahead of us. If we had not been able to stay in a room only minutes from Erin's ward, I am unsure what we would have done. I know that I could not have returned home and been so far away. This means our options would have been restricted to sleeping on a chair, in the car or trying to find a hotel/friend nearby. As it was, in the 3 weeks that Erin was at Alder Hey I never had to be more than 5 minutes from her side. - I am so grateful for this.

At the time we didn't know we would have such a short time with our little girl - we thought we would have our whole lives with her. It is since she has passed away that the true value of the support that Ronald McDonald House provide has dawned on me. Each and every memory I have of Erin is precious - the early morning feeds; her first bath; watching her for hours as she slept; long sleepy cuddles. I know that if we had not been able to stay as near to her we would not have been able to spend as much time with her and these memories which I now hold so dear would be much less in number.

Erin was critically ill for the last two weeks of her life and required a number of emergency surgical procedures in the night. As we were so near to her ward, the nursing staff were always able to phone us when this happened and we were able to rush to her side and give her a kiss before her surgery. There was not much we could do for our lovely girl at these times and being able to give her a kiss and whisper words of encouragement and love in her ear was incredibly important to us. Had we needed to stay in a hotel or with a friend, I am sure that we would have not made it to her bedside in time to do this.

I hope I have managed to express how valuable the support that Ronald McDonald provide is. We stayed with them for a relatively short time, but there were families there with us who had been there for months and months. I can only imagine how much this means to the poorly children as well as to their parents. I truly believe that the work Ronald McDonald House do gives strength to families at a time when they need all the strength they can find.

Please visit the website for Ronald McDonald House to find out more about what they do http://www.rmhc.org.uk/about/. It costs them £25 per night to provide accommodation and support to one family and they support hundreds of families every night. Furthermore they are in the process of building more houses at more children's hospitals. Their aim is for there to be free accommodation for families at every specialist children's hospital in the UK.  If you wish, you can visit our fundraising page to make a donation to support them in memory of Erin http://www.justgiving.com/Erin-Clancy. Thank you very much - every pound will help make a difference.

Monday, 20 February 2012

Today I received some comfort through the post

I looked forward to something today - a feeling I don't get much recently. I was looking forward to receiving a package in the post; a package that I knew brought with it comfort and understanding. Half an hour ago this package arrived and here it is:



A beautiful bear donated by another grieving mother to help bring me comfort through a wonderful charity called Aching Arms. My beautiful bear has been donated in memory of Maisie Ruth. I cried when it arrived and hugged it tightly. It is hard to explain how much this bear means to me, but I am going to try.

Since my beautiful Erin passed away I have changed. I have become someone for whom there is no standard name - a grieving mother; a mother without her child; an angel mummy. I was pregnant for 38 weeks, I went through labour, I gave birth, I had my daughter for 22 days...... and then she was gone. Suddenly it doesn't seem okay to talk about these things anymore. If Erin had lived I would have gone through the gory details of the birth with my friends, I would be updating my facebook status with the incredibly cute things Erin was doing on a daily basis, I would be taking photo after photo and showing off my little girl to anybody and everybody who would look. I can't do that now, not because my friends don't want to listen, but because I don't know how to do it. When you have a new baby it is perfectly natural for you to talk about them and bring them into conversations. When your baby has died it doesn't feel natural anymore. I guess this is associated with the taboo that is baby death.

The people I have found it easiest to talk to are people that I have never even met - other bereaved mothers through twitter. We don't go into great detail with eachother, but we are there to offer comfort: through a virtual hug; a message that says, 'I understand'; or a quote that seems to sum up perfectly how you are feeling in that moment. This bear is a further extension of that - a physical thing that I can hold and hug with the knowledge that it has been donated with the most precious love in the world - from a grieving parent in memory of their precious child.

As well as feeling as though I am connected to the mummy who donated this bear, I also feel as though this has connected little Erin and Maisie Ruth in some way. Erin never got the chance to make friends or play and have fun - all of her short life was spent in hospital having horrible procedure after horrible procedure. This may sound silly, but now I hope that wherever they are Maisie Ruth and Erin have found eachother and that they are laughing and playing together.

As well as the comfort I have got from receiving a bear, I have also felt comfort from donating a bear in memory of Erin. I know how special Maisie Ruth's bear is to me and how much I will treasure it and I hope that Erin's bear will be as precious to another parent who needs it. I now plan to donate a bear on Erin's birthday every year.

I hope I have explained how special I think the work that Aching Arms do is. The charity is run by a group of bereaved mothers and to me that is obvious because what they do works. In some ways the idea of giving a bear to a bereaved mother to ease their aching arms seems simple, but the emotion and meaning behind it makes it so much more than that. Please visit their website to find out more and support them if you can http://www.achingarms.co.uk/. I wish that all bereaved parents could be offered a bear and that all babies whose lives ended too soon could have a bear donated in their memory.

Sunday, 19 February 2012

Turner Syndrome.......what's that?

We have started organising an Erin's Gift team to complete the Manchester to Blackpool bike ride in July. We are going to use this event to raise money for a very special charity - the Turner Syndrome Support Society (TSSS), so I thought now would be a good time to talk a bit more about Turner Syndrome.

I have to be very clear from the start and say that I do not know a huge amount about Turner Syndrome. As mentioned previously, we found out that Erin had this at 20 weeks of pregnancy following amniocentesis. We had never heard of it before and unfortunately our local hospital did not feel confident in explaining it to us. Therefore, upon learning of the diagnosis in a phone call on a Tuesday afternoon, we had to wait until the Friday before we could meet someone to talk through the implications for our precious baby girl. This was an awful wait - when all you have is the name of a chromosomal disorder that you know your unborn child has, the internet is not a friendly place. We read horror story after horror story and became uncertain as to whether our gorgeous girl would even survive pregnancy, never mind be able to live a good life once she was born. Among the scary stories, however, we found one website that offered some hope - the website for the TSSS http://www.tss.org.uk/  In particular, after looking through the gallery at pictures of gorgeous smiling girls we realised that maybe Turner Syndrome wasn't something to be too scared of and felt some reassurance.

In  brief - Turner Syndrome is a chromosomal disorder affecting only females, causing deletion of the X syndrome. Therefore, whilst the majority of women have two X chromosomes, women with Turner Syndrome only have one. In mosaic Turner Syndrome meanwhile, the second X chromosome is only partially deleted. The features of Turner Syndrome vary between women. In our meeting with the geneticist it was explained that Erin had a rare form of mosaic Turner Syndrome.

The geneticist reassured us that, although the miscarriage rate for babies with Turner Syndrome is extremely high (approximately 98%) we were now past the risky period and there was no reason why our baby should not survive pregnancy. She also told us more about the possible implications of the diagnosis for Erin, explaining that nothing was certain and a lot would have to be wait and see for when she was born. Overall she was very postive, however, there were 2 aspects of it that caused me particular worry. The first of these was the possibility of Erin having a congenital heart defect. We were reassured that she would have a scan to check this shortly after birth, but that she may require heart surgery.  However, antenatal scans did not detect any problems with Erin's heart and the cardiologist explained that even if there were, the surgery to fix it was relatively routine. At no point did we consider the fact that a heart defect may result in us losing our little girl.

The second thing to worry me was the fact that, due to the nature of Erin's particular form of Turner Syndrome, she would be infertile. This made me incredibly sad for my precious little girl and was the aspect of Turner Syndrome that I found most difficult to deal with. Throughout my life I have always wanted to be a mummy - the thought of being pregnant had always fascinated me and the experience of it had not diminished this. Despite this pregnancy being a stressful one I still loved it. I adored every day of carrying my baby; feeling her kick; watching my ballooning tummy and even the pain when she stuck her foot in my ribs. Realising that my darling daughter would never get to experience this filled me with great sadness. I felt glad that there was an organisation like the TSSS who would be there to support both Erin and I when the time would come to discuss this with her.

I think it surprises people to learn that Turner Syndrome affects 1:2000 females - I think this is a lot considering the lack of awareness there is. The work that the TSSS do is so important and so valuable to the women who have Turner Syndrome and their families. It had often eased some of my worries for Erin when I thought about the fact that she would have this community to support her and I was sure that through it she was going to make some great friends.

I have not gone in to great detail regarding Turner Syndrome in this post- mainly because I do not have the knowledge to do so. I would encourage everyone who would like to know more to visit http://www.tss.org.uk/index.php/what-is-ts. I hope we are able to raise lots of money to support this wonderful organisation as my brief experience with Turner Syndrome has taught me that much more awareness of it is required. Despite, the fact that the care and support we received from our local hospital during pregancy was brilliant it did always concern me that they did not know a huge amount about Turner Syndrome. I do not believe that any couple should have to wait 3 days from  hearing a diagnosis to finding out what this would mean for their child. Furthermore, I can count on one hand the number of people that we told about Erin's diagnosis who had heard of it before. I was preparing myself for finding out as much as I could about Turner Syndrome in order that I would be able to support my daughter in the best way possible and were it not for the TSSS I think this would have been a much more difficult task.

Friday, 17 February 2012

The day that twitter gave me hope

I honestly can't believe that I am sharing our story on the internet - that I am allowing people I have never met into our little world. 3 months ago I never would have imagined I would be doing this, but as I have found out - in 3 months your whole world can change.

The reason I am sharing our story is because I have seen the power of the internet to do good - I have seen how sharing a story can encourage people to donate their time and money to incredible causes. I have seen true kindness.

I had never been a huge fan of social media before I was pregnant - I had a facebook page and an occasional dalliance with twitter. Following Erin's death I was reluctant to return to my twitter page - my last tweet was one expressing excitement at my maternity leave which was about to start. That tweet reminded me of the hope and joy that I had once felt. Then, in the early hours of one morning, when I was feeling incredibly sad, I decided that I wanted to try and do something to help the people who had provided us with such comfort and support over the previous month. I set up a justgiving page to raise money for Ronald McDonald House, with a target amount of £500. I felt a bit silly, thinking this was optimistic, but decided it was worth a try.

I logged onto twitter and decided I would see whether anyone would retweet my page - the first person I chose was Andrew Flintoff. About 5 minutes later, to my great shock and surprise, I received an email notification - Andrew Flintoff had retweeted my tweet! Suddenly I had more followers and more retweets - a donation of £5 was made on my justgiving page. I was amazed and for the first time following Erin's death, I had hope!

It was just the beginning - in less than 6 weeks the justgiving page has raised over £5000. I now have over 1400 followers on twitter and my tweet has been retweeted by celebrities such as Lilly Allen, Danni Minogue, Gary Neville and Jo Whiley. More than that, I have had the great honour of meeting some truly incredible people who inspire and amaze me. I have met parents of sick children who are using twitter to raise funds and understanding; I have met brave people who are battling their own illnesses and tweeting to raise awareness and I have met other people like me - bereaved parents trying desperately to keep the memory of their precious child alive. I am moved by the kindness shown to me by complete strangers on twitter on a daily basis and am so grateful for the support I have been shown.

Twitter has allowed me to show off my beautiful girl to literally thousands of people. It has allowed me to raise money for a cause that is incredibly close to my heart and who help hundreds of families every single day. It has introduced me to people who have experienced similar loss and devastation to that which I have experienced. It has introduced me to friends.

I have met so many lovely people on twitter, that it seems a shame to single any people out. However, I do want to acknowledge two people who have shown incredible kindness to me and taken specific actions to support my fundraising.

One lovely tweeter - @dottiedesigns - has kindly donated 10% of the proceeds from the sale of her beautiful christening book to Ronald McDonald House. You can see the item here http://t.co/SwmXPbP4 and find out more about her at her blog http://dottiedesigns.blogspot.com/

Another kind tweeter - @LittleDoers - has generously agreed to help design a logo for Erin's Gift that we can use on our fundraising endeavours. This is fantastic as, even though I can see in my head how I want the logo to look, transferring that onto paper is near on impossible for me. You can see what she does here www.littledoers.com

I want to take this opportunity to thank all those who have helped me on twitter - there are so many of you. I hope I never become complacent about the support I receive, because it truly amazes me and has enabled me to take Erin's Gift further than I ever imagined......and it is still only the beginning!

It is all for you - beautiful Erin xxx


"Sometimes when we are generous in small, barely detectable ways it can change someone else's life forever" Margaret Cho

Thursday, 16 February 2012

I see you Erin, when I close my eyes.....

I see you Erin, when I close my eyes.....

I see you as a newborn, sleeping in my arms; your little hands clenched in fists and your beautiful mouth pouting.

I see you as a toddler, running all around; your little legs so chubby and your gorgeous face smiling.

I see you as child, playing with your toys; your hair long and golden and your expression so exciting.

I see you as an adult, chatting with your friends; your eyes deepest blue and your manner kind and caring.

I see you Erin, when I close my eyes.......... and for that I am thankful.



"No matter where you go in life or if we are far apart, a mother’s love will always follow because you left footprints on her heart." (Unknown)

Wednesday, 15 February 2012

Alder Hey

I think it is time for me to tell you about Alder Hey Children's Hospital and how wonderful the staff there were to us. As I explained in an earlier post, we spent time on two different wards - the first week on K2 and the next two weeks on the ICU. We came across nurses, doctors, surgeons, physios, secretaries, healthcare assistants, cleaners, anaesthetists, perfusionists and all were brilliant. In fact, I have nomintated them for a Tommy's award and rather than replicating my words, I thought I would copy the letter here:

"I would like to nominate the staff working on the intensive care unit at Alder Hey Childrens Hospital for the Miracle Unit Award.

My darling daughter, Erin, was born on 9.11.11 and transferred to Alder Hey when she was 1 day old. She had Turner Syndrome and was found to have a problem with her heart. On 16.11.11 she underwent heart surgery to fix this. Tragically, she suffered complications following her operation and was cared for in the ICU up until her death on 01.12.11. The staff who work on the ICU were incredibly kind and caring, not only to Erin, but also to myself and my husband.

Erin needed to be placed on an ECMO machine as her heart was very weak following the operation. This machine required attention 24 hours a day from a very dedicated team of staff. They had to monitor the flow of blood through it and take samples at regular intervals to check a number of things. It seemed very complicated and required a lot of attention, but the staff were never too busy to explain to us what they were doing and why it was necessary. We were amazed and extremely grateful for the dedication that they showed and the concentration and enthusiasm that they gave to their job.

Erin is our only child and we only had 22 days with her; we were never able to take her home. The staff on the ICU were so aware and considerate of this. Her medical needs meant that there was not much we were able to do for her ourselves, but they always ensured that when that was something for us to get involved in, we did. Therefore, I was able to assist with Erin's daily care needs and wipe her eyes and mouth and sometimes help change her nappies. They also understood my desire to breastfeed and supported and encouraged me to express milk throughout Erin's life. Being able to do these small things for my daughter was so important to me and I am so grateful that the staff realised this and encouraged me to help them. It demonstrated their empathy and understanding of my needs as a mummy.

Erin had to undergo many painful and unpleasant procedures during her short life, but the care with which these were carried out was plain to see. The staff on the ICU spoke so kindly to Erin and with such warmth when they were performing procedures, that it made leaving her in their care that little bit easier. Leaving my newborn baby was so difficult, but I always felt confident that she was being cared for by an extremely professional and caring group of people.

I can honestly say that we never came across one member of staff on the ICU who did not treat ourselves or our daughter with the upmost care and consideration. They encouraged us to get rest and look after our own needs as well as those of Erin. They also provided us with a room on the unit during the time when Erin was most medically unstable.

I will never be able to demonstrate to the staff on the ICU my full appreciation for the care they gave to little Erin. I am so amazed at the unwavering enthusiasm with which they approached their jobs even towards the end of what were very long shifts. At times they must find the work they do difficult, but they never let this show. They made what has been the most difficult and distressing time of our lives that little bit easier. There were even occasions during this awful time when we laughed and joked with the nursing staff - a true testiment to their humanity and kindness.

Finally, when Erin passed away they treated us with incredible care and compassion, enabling us to hold her as she died and cuddle her afterwards. Their kindness at this awful time will stay with me forever.

I wish more than anything that I could have had my darling Erin at home and in my care for the 22 days that she lived, but this was not possible. As she had to be in the care of others, there are no other team of people that I would have wished her to have been with. I truly think that the staff working on the ICU go above and beyond their job roles on a daily basis and truly deserve this award."


We will forever be grateful to them and will strive to show this appreciation through our fundraising. Therefore, The Alder Hey Imagine Appeal are one of the charities that we hope to support and raise money for through Erin's Gift. I hope that all sick children and their families receive the support that we did.