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 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 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 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 Please take a look and support them if you are able.