Monday, 19 January 2015

Wrapped in Love - Hugo.s Legacy

In 2014 I met a beautiful mummy on line via Twitter. I have been blessed to have met this beautiful mummy in person too. I have watched her grieve and grow. Leigh is a very special person in my life, as is her son Hugo

Image From

Although Hugo lived for just 35 days he has become a very important member of my team at Bliss. One of the big projects I am working on is a palliative care pathway for neonates in the North West of England. One of the essential things that babies and parents need is consistency. I think a lot about Hugo and his mummy and about her journey.

I have become aware that Royal Bolton Hospital are raising funds for a bereavement suite at the neonatal unit and I want to help. Other units in the region have these suites and Bolton need one too. The amount they need is £6680.43. If we can raise more than that then there are other projects at Royal Bolton they need help with. You can see the list here. 

This room will be there bereavement suite at Bolton. As well as a bed and furnishings and decoration it requires a portable ventilator and a cold cot. The Trust is covering the pipe work, removing the sink etc but the rest is down to fundraising and I am desperate to give parents a safe space to go with their baby for their last hours.

This year my big challenge is to lose weight, and walking is an important part of this. The main fundraising activity I will be undertaking is a walk from Bury to Bolton, Fairfield Hospital to Royal Bolton via Radcliffe.

This walk is exactly 10 miles, one mile for every week Joseph was in hospital. This walk will be held on 16th May. I will then walk once a month until the money is raised. This walk is very symbolic for me and a chance to reflect on the amazing journey I have been on with Joseph and what we have achieved since then. Much has been given to us, therefore we have much to give back.

In addition I will start publishing my weight loss recipes on line and would ask that if you like them you make a donation.

I also need people to walk with  me, and to raise funds too. Please visit MediEquip4Kids to find out more. You can join me at Fairfield Hospital or in Radcliffe or cheer along the way!

If you would like to sponsor me click here

Every baby and every parent deserves a gentle, compassionate space in which to experience their last moments. Be part of something life changing.

Thank you

Saturday, 17 January 2015

My Dad

"We are delighted to hear your news that you are expecting, we don't care what it is, as long as it is healthy and as long as it is a boy".

As my 1lb 7oz baby was confirmed as a boy I thought to myself "well I've done half the job".

At 3 in the morning when expressing as my baby learnt to live on his own in hospital, I would often ring dad. Dad was really bad at converting the time difference, so he would never panic just chat to me in his quiet way, telling me how much he loved me and how proud he was of me. And how happy he was to finally have a grandson.

Despite the difficulties, my dad met Joseph 3 times. At 6 months, 21 months and for the final time at 5 years of age. My son knows his Aussie Grandad and loves him dearly.

Funnily enough, it was my dad who taught me about sick babies and losing babies. I was 7 and we were in church, St Edmunds in Mt Nelson that I think may no longer be there. It was almost a shed of a church, perched above Hobart. I loved it there. The minister was talking about a family who had lost a baby, and how we should be kind to them and care for them. I asked my dad why noone was looking for the baby. (who does that remind us of - I think I have given birth to the male version of myself sometimes)

He gently explained that babies sometimes die and we call it "lost". He explained that they can die before they are born, or after they are born. This conversation has stayed with me.

My dad loved babies. He did a lot of my baby care when I was growing up. He weaned me on lamb's brains. He took care of me, bathed me, washed my pandas, and always supported me. He wrapped me in love.

My beautiful friend Jenny said that my father was in heaven taking care of Hugo.  I can just imagine my dad bouncing Hugo on his knee, feeding him lamb's brains (do they have lamb's brains in heaven?) and singing him "Away in a Manger" as he sung to me every night even in July. I can still hear his voice "bless all the dear children in thy tender care, and them to heaven to live with thee there"

I have been asked to suggest a bible passage for dad's funeral. My dad was high Anglican and made his peace with God before he died (his words were The Church but hey) so I have chosen Matthew 18:1-5; 10-14

At the same time came the disciples unto Jesus, saying, Who is the greatest in the kingdom of heaven?
And Jesus called a little child unto him, and set him in the midst of them,
And said, Verily I say unto you, Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.
Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven.
And whoso shall receive one such little child in my name receiveth me.
10 Take heed that ye despise not one of these little ones; for I say unto you, That in heaven their angels do always behold the face of my Father which is in heaven.
11 For the Son of man is come to save that which was lost.
12 How think ye? if a man have an hundred sheep, and one of them be gone astray, doth he not leave the ninety and nine, and goeth into the mountains, and seeketh that which is gone astray?
13 And if so be that he find it, verily I say unto you, he rejoiceth more of that sheep, than of the ninety and nine which went not astray.
14 Even so it is not the will of your Father which is in heaven, that one of these little ones should perish.

I will miss my father, and I am hurting like nothing on earth right at the moment. But I am safe in the knowledge that he loved me, that he gave me my compassionate heart, my belief in babies, and my fragmented, messy faith.

I am my father and he is me. 

And my beautiful son is the grandson of an amazing man.

Do not sleep my dear dad, stay awake and look after those babies til we can see them again. 

Friday, 9 January 2015

Teaching Children Not to Rape

People who know my blog will understand why sexual body safety, rape and little children are a big concern of mine. My journey as a survivor began when I was 3 years old. By the time I got to late primary school where our "sex education", such as it was, began, it was too late for me.

I strongly believe that the foundations of good sexual behaviour in later life need to be built early on. Not in a frightening, salacious way, in a way that is calm, measured and well thought out. 

I strongly believe there is only one set of people who, at the end of the day, are responsible for ensuring the safety of their children, and that's their primary caregivers. Parents, most usually or guardians. We can't rely on the school system, on the media, on others. It's our job.

And safety isn't just teaching children about their body, it's teaching about other bodies, and about who has rights to those bodies.

We have to teach our children not to rape. 

It isn't "sad". It's a fact. We teach our children not to steal, not to murder, to be good people. We have to teach them not to rape. Starting at 17, the age of consent, is way too late. Hands up those who waited til the age of consent to be sexually active (I did but I believe I'm not the norm)

Rapists aren't slimy creatures that live in drains like mutant turtles. Rapists are people who can't control their urges, who think sex is their right, who make errors of judgement, get caught in a moment and can't escape from it. Rape once you are a rapist, rape 100 times you are a rapist. A rapist  might be a person who is generally "a good person", perhaps a person who gets drunk or high, who gets caught in the wrong crowd, who loses their inhibitions due to drugs or peer pressure, it could be a one off incident in an otherwise non violent sexual career.

This is no way whatsoever rape apology. Not at all.

As parents and caregivers we have to get inside the mind of a rapist to ensure the children we love and care for understand, and understand not to rape.

The easiest things to teach are this.

Body Safety

The PANTS rule.

This is a tool developed b the NSPCC. I do this at home but also in public. Our GP surgery has the leaflets in reception and we chat about it there. The PANTS rule is not at all confronting or scary.

  • Privates are private
  • Always remember your body belongs to you
  • No means no
  • Talk about secrets that upset you
  • Speak up, someone can help
Consent and keeping other bodies safe

You can extend the PANTS rule to ensure that children know that this truth exists for everyone. That as their privacy and consent is to be respected, they are in turn to extend the same rule to others.

I think "no" needs to go further. To ensure a child does not become an adult who rapes they need to be aware of active consent. That the person they choose to be intimate with has actively engaged in the process to move forward they have not been cajoled or coerced, and that they have the presence of mind to do this, i.e. are not under the influence of a substance or person etc.

We need to get rid of  the fairy tale of sex.That our children are going to fall in love and have sex with someone they are deeply committed to.

In reality our children at 5 may only be 10 years away from having sex. The time to start is as early as possible.

You don't have to mention or talk about actual sex until much later, but the sooner you start building the scaffolding, the stronger your structure will become.

Monday, 17 November 2014

World Prematurity Day 2014

Sitting here I had no idea of what the future may hold for this tiny baby, so frail, so sick. I was full of fear and apprehension and love. Oh such love I felt for this baby not much bigger than my heart.

We were lucky. Beyond lucky.

My first World Prematurity Day in 2010, the inaugral one, was much different to this one. It was a day that wasn't really known in the rest of the world, just the US, and really just parents. It was a day to reflect and celebrate. The day was largely about my own experience, which though it didn't feel so at the time was a positive one, with a healthy child at the culmination of our journey.

However now I have travelled further along the road World Prematurity Day means so much more to me.

Some babies born prematurely don't go home. Their stories are real, valid and need telling. I would urge you all to read this post by Hugo's mummy. 

Some babies have lifelong implications of being born prematurely. Their premmie story is never over. 

In this country we have the amazing NHS and I see dedicated health professionals each and every day. They care for the babies and the families.

I see dedicated parents and other volunteers who want to use their own experience to help ease the journey.

And I look out on a world where premature babies in many countries don't stand a chance merely because of where they are born.

Premature birth is about
* women's health
*economic and social equality
*financial resources
*clean water
*good sanitation
*trained health professionals
*clean and efficient hospitals
*ambulances and transport teams
*bereavement support and caring palliative care
*psychological support
*educational systems that understand prematurity
*companies who develop equipment and medication

This is list is not exhaustive.

We all each and every one of us, have a part to play in the premature baby story, whether we know it or not.

Happy World Prematurity Day

Thursday, 30 October 2014

A Time for Peace

View from Mt Nelson where I grew up
Just over 2 years ago I started on a journey to healing. I disclosed my childhood story to you all here on my blog on this post Jimmy Savile is Dead

This journey was one I didn't take alone. I disclosed to my family, my friends, and sought therapy. I started with Jo a lovely person centred counsellor and then onto cognitive analytical therapy, quite the hardest thing I have ever done. I had to face such issues as exploring why I was chosen, and how to overcome my darker feelings. It was really tough. To let myself be a little girl again, to go back to that place, to remember things I had shut away.

I had to explore and revisit pressing charges. This has taken a lot of thought and energy and time. Many tears, and much research and getting lots of people's input including my family. For many reasons I decided for the final time that I would not. I won't go into my reasoning here, suffice to say that if the man is still alive he is very old, my evidence isn't that strong with the passing of time, and I don't feel anything would be served to pursue a traumatic case at this stage.

Today I returned to the house where it happened. I stood outside, and I felt, well, nothing. I felt cold and shivery at first, and then I rationalised it. It was just a house. The parts of the house where I had been traumatised had been demolished, which in itself was very healing. The people associated with the house are long gone. It's over. My childhood is over.

My own house next door is intact, with a different garden, and fresh paintwork, but still the same house, where I had safety. 

One of my favourite pieces from the Old Testament is Ecclesiastes 3 and today Ecclesiastes 3:15-17 is in my heart so I will share it here for those who may not know it. Today I feel that there is justice, but not mine to see done. I can have peace. 

Also whilst in a Biblical frame of mind I have led to 1 Corinthians 13:11 I stray from the NIV to use the New Living Translation

"When I was a child, I spoke and thought and reasoned as a child. But when I grew up, I put away childish things."

I had processed my abuse and the repercussions in a childlike way, because that was what I was. But I am grown up, I am safe, and I am ready to put away that childish way, that was right when I was a child, and to process this as an adult, a strong, resilient adult. 

There is much left for me to do, a new story to write, a successful one.

It's time for peace. 

Ecclesiastes 3:15-17New International Version (NIV)

Whatever is has already been,
    and what will be has been before;
    and God will call the past to account.[a]
16 And I saw something else under the sun:
In the place of judgment—wickedness was there,
    in the place of justice—wickedness was there.
17 I said to myself,
“God will bring into judgment
    both the righteous and the wicked,
for there will be a time for every activity,
    a time to judge every deed.”

Saturday, 27 September 2014

The Story of Beatrice

I started at Bliss early in 2013 and one of my first things I had to do was visit the Bliss office for 2 days to get to know the team, and to learn some of the ropes. One day one of my colleagues opened the cupboard and there was a beautiful big bear. She didn't really have a purpose, so I offered to adopt her. I tied her to my suitcase and she became my constant companion.

I asked some Twitter friends to name her, and my favourite was Beatrice - bringer of joy. I take Beatrice to presentations where I will have a table. She provides a focal point, and "softens" my displays a little. A teddy bear is the perfect choice as to me a teddy bear represents attachment, not only what babies need most, but so do parents in difficult situations, they need to feel secure, knowledgeable and cared for. That's what we strive to do at Bliss.

Beatrice also provides a talking point. I take my materials in my shopping trolley and sit her on top. People often ask about her, or laugh that a grown woman has a teddy bear, it's a great opportunity to tell people about Bliss and what we do.

You see, we are a small charity. A lot of people are embarrassed when they say "oh I've never heard of Bliss". I reassure people that in a way that's a good thing, it means you haven't had to use our services. The saddest thing is when people say "oh but I had a baby in special care and didn't know about you".

Beatrice used to wear an oversized t-shirt. I offered to customise a shirt for a one year old for our buggy push today, and then decided to make one for Beatrice. 

I would love to make one for your charity. If you have a bear (or a small person) and a charity t-shirt get in touch! It's a free service as I am just a home sewer maybe down the track I'll charge!


Thursday, 25 September 2014

Bliss Manchester Buggy Push - Heaton Park September 27th

When my husband took paternity leave when we finally got to bring Joseph home our first outing as a family was to Heaton Park, so what a perfect place for a Bliss Buggy Push

I first used Bliss services in the hours before Joseph was born. I was given the Bliss Family Handbook which helped me navigate our journey. I used the Bliss Helpline and spoke to a parent when Joseph was just 5 days old, and again when we were struggling with infant feeding.

Fundraising is a really important way we raise money to keep doing what we do, to support babies and their families during their time in hospital and beyond.

We will be gathering at the St Margaret Entrance from 1pm ready to walk at 2pm, taking in the surrounds of Heaton Park and finishing at the horticultural centre where you can buy very reasonably priced drinks and cake, or have a picnic in the grounds.

As well as raising funds it will a fun afternoon to meet others too.

If you haven't registered already you can register on the day.

Hope you can make it!