This post has been a long time in writing, it's one thing to share my story but another one completely to put into words the heartbreak of another.
On Saturday 2nd February Jennie Edspire and her family's lives were devastated when little Matilda Mae never woke from her sleep. A week away from Alexander's 6th anniversary it was a heartbreaking reminder of that time for us.
The very close world of Mummy Bloggers was rocked to the core as they found out this devastating news and I was contacted by a few who know me and my story to ask me to reach out to Jennie, I was more than happy to do so. I'm not a blogger but I follow a few, I love reading other people's hints and tips, recipes, life stories and Jennie's story and words since this tragedy happened have been so heartbreakingly close to my experience I wanted to share her blog link so you can see her journey.
Jennie hasn't held back in the telling of Matilda Mae's story but she writes with such honesty and emotion you have to admire her strength and courage. Many would hide away from the world, shut themselves off to grieve privately but in telling her nightmare I feel Jennie has started creating her legacy for Matilda Mae. Jennie is a doer, she reminds me of me! Using the internet to it's full resource to keep the memory of her precious daughter alive she is blogging making people aware that Sudden Infant Death Syndrome is a very real nightmare. On launch day for the Lullaby Trust there was an amazing outpouring of support from her blogging community who all linked up to get the message out there and I know that she is also fundraising for them by holding A Mile In Memory of Matilda Mae.
She is sharing her story, making it public and seeking help, there are so many people reaching out to her I hope she knows she is never far from many's thoughts. http://www.edspire.co.uk/
Jennie has been nominated in the BritMums Brilliance in Blogging Awards (BiBs) and I'd like to help her get the recognition she deserves for wearing her heart on her sleeve. This is a bittersweet nomination for Jennie and one she maybe feels she doesn't deserve or wouldn't have happened were it not for the loss of her daughter. I wish with all my heart another family hadn't been affected by SIDS and I hope Jennie takes strength from the nomination, Matilda is helping her share this very special and emotional journey of grief. Please take a minute to vote for Edspire
It's for families like Jennie's and babies like Matilda Mae and Alexander that I fundraise, I want to stop Sudden Infant Death Syndrome in it's tracks, to stop families hurting like we do, to keep babies where they belong...in their mothers arms!
So as one more baby leaves this world in turmoil I was reminded of a Poem written for and read at the Family Carol Service held in York at Christmas by FSID. From one heartbroken Mummy to another Jennie Thank You for telling people how it feels to be us x
Precious Memories - Valerie Robinson
You were with us for a short time only.
Such a very short time.
Too short for us to know you well:
Part of our lives forever, we thought,
Not knowing that yours would be so short.
We will never know the person you would become,
You will never know life's joys and fears,
But you understand that you are loved:
The world and life you have barely seen,
Which should have been yours-Should have been.
Did you know our anguish when you were gone?
Part of us, yet, no longer here.
We will never understand the reason for our loss:
Life's gift can be lost through accident or disease,
But who understands when it's neither of these.
Does God need some children in Heaven
To balance the long-lived souls.
Why He wanted you with Him, he alone only knows:
Memories of our happiness are still so deep,
All too soon you went to sleep.
Your life to us was precious,
We valued every hour.
The memories of you will never be lost:
With each passing year we let our love grow,
Why you are not with us, we still don't know.
What a whirlwind of a week that's been! This time last week we were getting ready to leave for London and frantically waiting for the official launch from The Lullaby Trust so we could announce it on here, Facebook and Twitter.
Yesterday I had the honour and privilege of being at Number 10 Downing Street at reception hosted by Mrs Samantha Cameron for The Lullaby Trust.
I took a guest with me, David Cross a close friend of ours for a long time. David is the founder and company director of Coda Studios in Sheffield and along with his wife Toni have been a fabulous support both personally and with our fundraising. Coda sponsors the ball every year, they sell raffle tickets for us and they hold their own fundraising events as well.
Sometimes for me to say Thank you doesn't really cover the depth of emotion I feel at the generosity of our sponsors, I only wish I could have taken all of them with me.
Lots of people have told me this week how brave we were to go on National telly and speak about our story, it's not brave!
I don't want to be doing national telly, I don't want to be at a reception at Number 10, I don't want this website to exist and I don't want to host Alexander's Ball. What I do want is for my family to be complete again, for our missing member to come back and make this ache in my heart go away, I want hugs and kisses from all 5 of my boys, I want Alexander back!
This is never going to happen and so I keep him an active member of our family by fundraising and raising awareness of Sudden Infant Death Syndrome. Alexander gives me the strength to carry on day to day, to tell his story in the hope that one day SIDS will no longer exist, that families won't know the heartache of that missing baby as we do. Along the way I hope that we reach out, to let those families that are going through their worst nightmare, know that they are not alone, that there is an amazing charity out there to help them and that there are other parents willing to offer a shoulder to unburden themselves on.
It was amazing to see the wonderful supporters of The Lullaby Trust at Number 10 yesterday, that we are all working towards the same goal and by sharing our sad stories, will ultimately help The Lullaby Trust in their mission.
Thank You everyone for all your good wishes, support and comments. As the most phenomenal week comes to an end I wonder what I've got to look forward to in the future with The Lullaby Trust...
Keep watching this space for Alexander's Charity Ball 2014 announcement !!!
We did it ! We went on national TV!!!
I got the call from Louisa Mullan, The Lullaby Trust's Press manager a couple of weeks ago asking if Ian and myself would consider doing the interview for them. This is a big deal, it's very hard to secure an interview on the coveted This Morning and it was an honour and privilege for the charity to have entrusted such an important interview with us!
I have had constant butterflies and nerves since then.
I had spoken to Ellie Cole about our story on Tuesday, Ellie is an assistant producer on the show (I hope that's right) she was already well prepared having read what I have written previously. It's her job to make sure that all the information on the show is accurate and correct and she did a fabulous job. She is really lovely and handled a difficult situation fantastically.
We traveled to London the day before the interview so as to be bright eyed and bushy tailed for the morning, I didn't anticipate being awake half the night due to an overactive mind and nerves.
A car was sent to collect us from the hotel and we arrived at the Southbank ITV studios ...exciting!
We were met by a lovely security guard and shown the way with much excitment and photo taking at the This Morning lift.
The whole team at This Morning are fabulous, very friendly, relaxed and informed. There wasn't the hustle and bustle I expected, just an organised and busy office!
We were offered a drink and then almost immediately taken into make up, absolute heaven for me but Ian was a little apprehensive. Tash was fabulous, very chatty and really down to earth, she did an amazing job with my make up and settling my nerves. Strangely whilst I was in the chair, with other guests and the legend that is Denise Robertson having their hair and make up done, Stephen Mulhern popped his head around the door to say hi!
There is a lot of waiting around but whilst we were in the green room we were watching the show, with guests filing passed the door. I was caught unaware when the photos and video of the boys was shown on the line up, I cried a little seeing those two little faces on telly knowing that one would never know the impact he would have on the lives of others.
The first glance of Philip and Holly was a fleeting one as they made their way to the studio but eeeekkkkk.
Before the show started we were asked to do a pre record, basically sit on a sofa and chat to each other whilst they filmed us for one of their 'coming up' segments. Harder said than done! When you are told not to smile too much and just talk about anything (no one would hear us on the tv) we did just smile and run out of stuff to say, it took about 5 or 6 times to get it right.
Then it was us! We had mic's on, we were led into the studio, make up re touched and it was time ...
It sounds so cliched to say but Holly and Phil are such lovely people, very warm, empathetic and extremely good at making you feel at ease in a very alien environment.
The both immediately stood up, asked us how we were, gave us a hug (eeeeekkkkk again) and said how brave we were to do what we were but how fabulous and important they thought it was to highlight sids and of course the work of The Lullaby Trust. I relaxed immediately, all those nerves disappeared and it sounds odd to say but I felt safe sat on that sofa opposite two absolute professionals and of course next to Ian.
All too soon it was over but we weren't ushered away, we were given the chance to chat a little, have our pictures taken, ask for autographs for the boys and of course to hand over Harrison's letter to Philip, he thinks The Cube is 'EPIC' and wanted to ask Philip for his autograph and a few questions! Thank You Philip for taking the time to reply to him, he was over the moon and I'm not quite sure he has come down off cloud 9 yet! We will of course be framing the note and picture at his request.
I'm so please and proud that we did the interview, it is a once in a lifetime chance and if it has helped save just one baby or one family to realise they are not alone in their suffering then it was more than worth it.
I hope it had the desired effect for The Lullaby Trust, they are an amazing charity, only small who are working tirelessly in the background for parents like us offering support and a future as well as keeping all those thousands of babies born every year safer.
The interview is still available on the ITV player but I'm not sure for how long. This is a link to it as of today http://www.itv.com/thismorning/health/sudden-infant-death-syndrome/ Please have a look and if would like more information please contact http://www.lullabytrust.org.uk/
Finally we'd both like to say Thank You for all your lovely comments on Facebook, Twitter and on the This Morning and The Lullaby Trusts Facebook pages. It was all for this young man and for the future of our boys x
This is it! 18 months in the planning and the big launch has arrived.
The Foundation for the Study of Infant Deaths (FSID) is a charity close to my heart, they have enabled me to see a future and create a legacy for Alexander.
The decision to change the name was not taken lightly but in this ever growing market of charities it was felt that FSID needed to stand up and compete.
The Foundation for the Study of Infant Deaths will now be known as ...
The Lullaby Trust
Safer Sleep for Babies Support for Families
I love the new name, it couldn't be anymore caring, warm or inviting. It immediately for me conjures up images of babies being cared for, being sang a lullaby as they sleep. A charity I can trust to do the best for my baby.
Much hard work has gone into this launch, without the vision and drive of our CEO Francine Bates and the fabulous team she has behind her I fear this change may not have happened.
As a bereaved parent I've always been proud to be associated with FSID and the work they do, I know that as a fundraiser the interest I can get in The Lullaby Trust is going to be fabulous. No more tuning out after 'Foundation' and waking up to the word 'Death'. People are afraid of the word and its hard to explain the vision of the charity when people can't remember the name, say it incorrectly or just focus on the 'D' word! for all the latest news and developments
Please have a visit of the new website, give them a like on facebook and follow them on twitter lullabytrust.org.uk
Keep you eyes and ears open for the official announcements and if you are near a paper shop I may have done a small piece for The Independent !!!!
Even more exciting than that is that The Lullaby Trust have entrusted a very very hard to come by interview with us.
We are going on This Morning!
That's right Ian and me will be making an appearance opposite Holly Willoughby and Phillip Schofield on Thursday 11th April ... cue nerves for about 2 weeks and increasing feelings of sickness. I'm proud that they asked us to represent them and I hope we do them proud.
So there we are I can see a fabulous future in store for The Lullaby Trust keeping all those values and moving forward to a new future, keeping babies safe and supporting families.
Welcome to our blog I will try as regularly as I can to keep you up to date with The Ball, The Charity and any other news !