Tuesday, 12 February 2013

Matilda Mae - A Precious Star

As most of you will know a Precious Star Fund has been established for beautiful Matilda Mae, taken from us all too soon at 9 months old. Matilda Mae was a term baby, but I chose Bliss because of the video above.

You see I met Jennie through Bliss, she says inspired her to blog, but Jennie is a born blogger, and her blog Edspire is beautiful. Jennie was born to document and inspire. Her photos, her videos, her creativity inspire me.  I have included the video above as it is Jennie explaining why she blogs, and it is just so poignant.

I am a doer. I hate situations like this. If I was around the corner I would have cooked meals, baked cakes, entertain her children, anything. But from Manchester there isn't a lot I can do. So I clicked a button and opened a Precious Star Fund.

Bliss is a practical charity. They have kindly sent me a break down of how funds are used and I wanted to share this with you.

£60 will fund a neonatal nurse on a Bliss study day.

£125 will cover the cost of training and supporting a helpline volunteer

£500 will fund a parent support group for a year

£2 500 will train a neonatal nurse in developmental care

£5 000 will provide a study day and support to health visitors caring for premature and sick babies after discharge from hospital.

The Precious Star fund will be open forever, and become a legacy that Matilda leaves to babies all over the UK, and their parents, who like Jennie and I have sat by incubators, waiting, watching, worrying and wondering.

A lot of people have asked me "I want to donate but can't afford to right now" that is more than fine, you can donate when you are ready.

I intend to hold a cake sale to raise money for Matilda's fund, which I will do the week of her saying goodbye. Pink, purple and star themed cakes, for our beautiful girl.

Sunday, 10 February 2013

Matilda Mae - No More Next Times

Being a member of the premature baby community for 3 and half years now, sadly baby loss is not uncommon. Every loss is so hard, I have lost count of the number of babies I have mourned. Every single one breaks my heart and makes me weep. I don't see myself as a leader just a mum standing alongside another. I haven't walked in Jennie's shoes personally, I can only imagine the deep pain she is going through. I feel a deep sense of loss and I only met Matilda once.

Last Sunday I learnt the previous night a baby had died. Matilda Mae. Matilda was a precious angel, I met her at Britmums Live, watched her with her mummy, and as she was only very new thought "next time I will have a cuddle". I followed her progress and watched her grow via her mummy's beautiful blog.  Matilda has no more next times. Matilda Mae was 9 months old. A healthy term baby, just tragically fell asleep and never woke up.

I know that all of us who blog and those who know Jennie through Bliss are with her at this time. I know everyone is thinking of ways to remember and honour this special precious little girl.

So on her "giving back to God day" I invite you to do the following:-

  • Wear pink or purple for Matilda Mae
  • Sing Make Me A Channel of Your Peace
  • Blow some bubbles for her - which is what her family and friends will be doing at the ceremony. 
  • At 8pm play Muse's starlight really loud so Matilda Mae can hear it
  • Consider, if you haven't already, making a donation to her precious star fund which can be found here
Once I know the date I will edit this post and republish it. 

Tuesday, 5 February 2013

For Matilda Mae

On Sunday I was stressed. I won't go into detail today but Joseph had said something that I'd had to report to Social Services. Then on Sunday the police specialist Child Protection Team interviewed me. My dear friend Kylie has her son Lllewellyn in hospital and I just felt so totally overwhelmed. I had a work trip to London on my schedule and my train was booked for 1.35. So I left my precious son with his dad, and made the trip. My consolation was that I could visit Kylie and be there for her.

This tree is near where I am staying, at night it glows with fairy lights

I knew I had to work on the train. I paid £15 for an upgrade to first class and took my seat. I plugged in Leonard, my work laptop, and I opened Facebook to work on my Bliss Manchester page. Suddenly I was faced with the most earth shattering news. My dear friend Jennie had lost her precious daughter Matilda Mae at just 9 months.

Now there are many parent bloggers sharing their thoughts and love for Jennie. But you see, I don't know Jennie as a parent blogger. Jennie is Bliss sister. I met her on the the Bliss Forum and her blog at first was just a record for her twins William and Esther born at 27 weeks.

Jennie and her husband funded my Cybermummy trip in 2011. She has always been a huge support to me. When she told me she was pregnant and it was "all their own work" for the twins had been IVF, I was delighted. When she told me that they had thought of the name Matilda I was over the moon. Jennie could not have known that Joseph, should he have been a girl, would be Matilda.

Like everyone, I feel helpless. Because I would not know Matilda but for Bliss I have set up this fund in her name.

You can learn more about Matilda on Jennie's Blog.

My heart is breaking, I can't stop thinking of Matilda, and my heart is with Jennie and her family.

Sunday, 3 February 2013

An Update

I thought I would do a little update post for you all. I am sure many of my followers catch me other ways but in case you don't here is an update.

First of all, I have a new blog! I only post when I feel like it. I have joined one blogging network as they asked me to, but am planning a low key, non mummy blog with social issues, craft projects and funny stories. I'd love you to come and look and subscribe my email if you wish. It's called Kykaree

Secondly my new job with Bliss Charity is going well, and I am currently working on an audit of neonatal service provision and need in our area. Bliss Manchester is on Twitter and also on Facebook, and I'd love you all to keep in touch with developments as we roll out the three volunteer opportunities through out the region.

If you are keen to volunteer with Bliss there are some amazing opportunities to really make a difference to special care babies. Remember that we are talking about any baby who has needed special care at birth not just premature babies. As you can see on the website, whilst our focus in our region in on Bliss Champions, Bliss Family Support Groups and Bliss Buddies, there are other roles too.

Thirdly, we've had some teething problems with childcare and are currently looking at options for Joseph. Thanks to his amazing team at Play Away Joseph is being well looked after and we're currently seeking a childminder or nursery placement in the afternoons. It has been a rollercoaster for two weeks to be honest. My post on Kykaree eludes to the drama but will make you laugh too.

The fourth thing I wanted to tell you about is my amazing friend Daniel who wrote those amazing posts on Duchenne Muscular Dystrophy and his experiences. As you will know this Government is making the most mind boggling series of cuts, and the latest suggestion is prepay benefit cards. Please read and comment on this most moving of posts by Daniel. Also on Kykaree we wrote a post together about our meet up. Despite looking like a couple I am most definitely still happily married and Daniel is still a bachelor!

Joseph is doing great with adjusting to life with a proper working mummy. He is enjoying nursery, and has recently been signed off from orthoptics for his eyes, so we're just about all clear.

I am so proud of my little man, and I am proud that his birth has led me to working to provide a clear network of support in our region for parents who have had a baby in special care.

Thank you to you all for your love and support too. I wanted to mention the MADs the fabulous blogging awards. This year there is no Inspirational category, sadly, a few categories had to be streamlined, understandably. I know I have such a strong and loyal following, but I am asking that you don't nominate me this year for Not Even A Bag of Sugar. I feel there are some amazing premature blogs out there, just look in my reading list at the top of the page, and go and show them love and care.

If you do want to nominate Kykaree feel free, but it is so new, and  with so little posts I don't think its worthy yet.

Thank you again for all your support of me.