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!

Tuesday, 26 August 2014

Hama for Grown Ups

I was very excited when the lovely Merry was asking for bloggers to join in her #craftysummer, and if you follow me on Instagram you will have no doubt seen what I've been up to. I was sent some Hama beads alongside some other goodies which I will tell you about another time.

I was first introduced to Hama 8 years ago when visiting my nieces in Luxembourg. They had made quite simple pieces and I couldn't quite grasp the concept of putting bits of plastic onto a board and ironing it. It did look good for graph reading, colour sorting, counting and fine motor skills, but I didn't care much for the finished product.

When I started following Merry's lovely blog A Patch of Puddles I noticed her posting about her crafts and I started looking at Hama beads. Last Christmas I had my first attempt making presents for my best friend. 

I have just done up my craft room and wanted to make some things to brighten it up.

 I found the birdcage and mermaid on Pinterest and adapted them. The birdcage is mounted on some left over fabric and placed in a frame that had been broken. The mermaid is just waiting for a frame to turn up. The frames I created from scratch, I love them both but think my pansy needs more work.

Hama is a fabulous craft for grown ups, it's inexpensive, mistakes are easy to put right, and it's fun.

A word on the stripey beads. These are Perler, a different brand, which I picked up in my local craft shop. I wouldn't buy Perler again. I love the look of them but they are a pain. The Hama melt effortlessly whereas the Perler require a lot more ironing, which I learnt the hard way by having them all off them having to quickly replace them whilst still hot to prevent them setting and never fitting again.

I can highly recommend Hama at Craft Merrily and have just placed a good sized order so no doubt will be instagramming again soon!

Have you tried Hama?

Sunday, 24 August 2014

As Long as it's Healthy.....

How often do we say this when we are pregnant?

Healthy. All I want is a healthy baby.

Richard Dawkins made himself relevant and important again in the past week with tweets about a woman's moral obligation to terminated a fetus with Down's Syndrome. The delightful Dawkins, who I doubt very much has had an extensive experience with disability, went on to say people with autism are enhanced so they're ok, people with Down's Syndrome are not enhanced. As a disability support worker with 20 years experience I am afraid I believe this is nonsense. 

Dawkins isn't talking about choice. He's talking about a moral obligation to terminate life. That's anti-choice.

When I was pregnant I asked about nuchal fold scans, and at the time in our area they weren't available, only the triple blood test followed by amnioscentisis.

I made a decision. I wouldn't have the triple blood test. Despite being 35, I decided I didn't want a dodgy result and then have to decide about amnio. By this time I had lost two babies and I considered getting to 12 weeks a major achievement. My husband completely agreed. As someone with a condition that is pretty much routinely terminated for now, he felt to do otherwise would be very hypocritical.

I am very blessed. I have a lot of experience with people with all sorts of disabilities and conditions. I was ready. When I found out I would deliver at 27 weeks I was concerned about what was ahead for my tiny baby. I asked for reassurance that treatment was the best option and was told time and time again by all the paediatricians that treating Joseph was the right thing to do.

At school there were worries Joseph had autism and all the teachers were worried. We've had a year of monitoring and tests. When the SENCO asked me how I would feel if Joseph had autism I smiled. It wouldn't change a thing in terms of my feelings. He would still be the same child I had yesterday. There's still some more monitoring, but the conclusion so far is he's quirky and odd, which is blamed on the prematurity but personally, I'd be pointing the finger at the parents.

The point is termination is a very personal decision. Disability can happen outside the womb, it's not necessarily apparent before birth or can be caused later.

Richard Dawkins deserves to be ignored but perhaps pitied. He must never have received a hug from someone with Down's Syndrome. He probably has never cleaned up after someone with autism has found the world too hard to deal with, or explain to a shop keeper that the boy you are supporting isn't naughty he just saw the sweets as "his" and took them, as he scrabbled for change whilst trying to stop the boy from running into the street as he saw a red car that he needed to touch, whether it was moving at 30 miles an hour or not.

My basic view of humanity is we all have value and something to add to society. Regardless of our disabilities.

Sometimes because of them.

Wednesday, 13 August 2014

I Wish My Best Friend Had Cancer*

*no I dont

My best friend has Duchenne. I have only ever known him as he is now, handsome, strong and intelligent. And in a power wheelchair when not in bed, and reliant on a ventilator to keep him alive. I've never known him running, sitting independently, writing, moving, eating, drinking. If I had grown up with Daniel maybe I would feel differently. If I had watched his decline, maybe I too would wish he had something potentially curable, less cruel.

Physically Daniel isn't in great physical pain, he doesn't have to have treatments like chemotherapy, lose his hair (age is doing that!) or suffer from side effects like neutropenia. I have seen cancer. It's horrible, frightening and the outcome is uncertain. The end can be swift and painful.

Last year Harrison's Fund's Alex Smith spearheaded the "I wish my son had cancer" campaign. I was horrified and hurt. I would never wish cancer on anyone, not my best friend and certainly not my son. I have seen my son fight for his life, told to preparer for the worse, so I am not without understanding.

I was critical of these shock tactics. However, I can see that this tactic was necessary.

A year on, the climate has changed. People are talking more and more about Duchenne. They are talking about early access to drugs, to experimental treatments. Great things are happening. Is this down to Alex Smith's campaign? The full impact cannot be known, but I think this hard hitting campaign got people not only talking, not only listening, but acting. For now, we are stating to see legislative change. Daniel has got involved and I am so proud of him, you can read his latest article here.

The time is now to keep fighting, supporting research, and pushing for change. You can read more about how to support the Muscular Dystrophy Campaign's Fast Forward Initiative here

To learn more about the amazing Harrison visit and consider supporting Harrison's Fund.