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)

15 
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. 


Monday, 11 August 2014

Blackberry Swiss Roll ( #Greatbloggersbakeoff2014 #1 Cake)

Last year, as an avid watcher of Great British Bake Off I followed the Bloggers Bake Off and wished I had joined in the fun. So this year I waited with baited breath to see if Jenny was reprising the linky and to my delight she has.



Part of my recover from my recent PTSD relapse has been to focus on my hobbies outside being a mummy and work. I was watching the Bake off with my husband who expressed a hankering for Swiss Roll. Joseph was desparate to pick blackberries that are already ripening in our area, so a blackberry Swiss Roll seemed the perfect way to marry both boys' requests.

I first made a simple jam like concoction with a cup of blackberries and half a cup of sugar. I cooked this gently on the stove for a few minutes until it had thickened then put it in a china bowl to cool.

Whilst this was cooling I made the sponge. On Bake off they separated eggs and whites but ain't nobody got time for that, and in my opinion it was just an added step to make it look more complicated.

I used 4 eggs, 110 grams of light brown sugar, 100g self raising flour and 1 teaspoon of vanilla extract. I used light brown as I felt the slightly caramelised flavour would go well with the blackberries. I whisked the eggs and sugar in my trusty kitchen aid, then lowered the speed to add the flour.

I cooked the sponge for ten minutes then turned out on parchment and rolled it up. Next time true to my school training, for the last time I made a swiss roll was in grade 8 in 1985, I will use a damp teatowel.

I then whipped some cream. Whilst it was doing its thing I spread the jam mixture on the sponge, added the rest to the cream, and then spread the cream on top, scattering blackberries as I went. Then rolled. It cracked. I had kept it rolled too long before unrolling I think, You can't really tell there's a huge crack but Paul and Mary would have been displeased.

The husband commented on how light the sponge was and how delicious the blackberries were. I think adding them to the cream was a really good idea, and it makes it such a pretty colour.

It was a delicious end to Sunday dinner and I am keen to try again!






Saturday, 9 August 2014

My Favourite Person

Today's chat as we walked into town "Mummy, I want a campervan with golden wheels", commented Joseph as we walked past a makeshift traveller site. I asked, "where is the first place you would go, in your campervan with golden wheels?" Joseph paused for a while. "I would go to Bolton and I'd have lots of cake in my campervan, and blankets for the babies, and I'd go to the hospital and help the mummies and daddies take care of the special Bliss babies".



I was expecting Disneyland, or the moon, or Stampy Longnose's house to play minecraft. I don't really talk about work and what I do a lot, or perhaps I do generally and he's absorbed it.

It's no secret that Joseph is struggling at school. He is "way behind" the other children. His school report was put in lovely positive language but it was clear in the subtext that Joseph is a loner, he doesn't really play with the others. Although the best bit was "Joseph makes everyone happy, and he is a joyful presence in the classroom".

My dear friend Leigh wrote this post the other day. It was the first time I had read someone say what I often think.

Being a parent is hard. We all have days where mindless whinging, refusal to eat something they ate fine a few days a go, a broken posession too many makes us lose it. We get over tired, over wrought and stressed out at times.

However, being a parent is a huge privilege. These humans, and that's what children are, little humans, are entrusted to us. Sometimes, they are taken from us.

I read Leigh's tweets and post and think "there but for grace go I". We both had severe pre eclampsia, Leigh copped the double whammy of HELLP syndrome. I think the fact I had been on methyldopa since early on probably staved this off for me. We both had very small boys. Both boys put up one hell of a fight. Hugo lost his. It breaks my heart to see Leigh's strength and grace and compassion. Sometimes I feel guilty for putting up a million Joseph photos and talking about him constantly.

However her post made me realise something. Yes, to read of a child bringing so much joy must bring a pang to the heart, when your baby is not with you. But to see a baby loved, cherished, and recovering from his prematurity must help in some way.

Children are not like dogs or cats, an endlessly yapping dog might well be one of the worst sounds ever, a cat climbing in to cupboards and knocking everything out is stupid. But cries of a child? A child exploring their world?

And don't get me on stupid. Joseph can't read or write at 5, the rest of his class are doing so much better than him.

But stupid? Nope, a stupid child doesn't want to buy a campervan with golden wheels to help families with sick babies.

I couldn't be any more proud of the special little man I have been entrusted with.

He's a star.

Friday, 8 August 2014

World Breastfeeding Week

Liquid Gold
"How do you intend to feed this baby?" the registrar asked. "I'm going to breastfeed him, and in fact I already have started.

When you have a premature baby life as you expect it to be is turned onto it's head. Nothing is as you have expected or intended it to be.

But one thing you can do is provide milk for your baby no matter how small. And it's not just a platitude, your milk is your baby's lifeline, produced for your baby by your body and isn't that amazing?

It isn't easy. Expressing isn't easy, if your baby can't feed from your breast. There is oodles of help and support out there to assist you in your journey. My favourite resource is the Small Wonders DVD which is clear, supportive and simple. Not all units have specialist breastfeeding coordinators and this dvd shows you what to do and how to do it.

Bliss have useful resources too.

When I had Joseph I was convinced I couldn't breastfeed him, noone had supported a mum with such a small baby to do so in our hospital so they felt it was better for Joseph to go on to the bottle. I have forgiven myself now, but I want you to know that it is possible. Sometimes bottles are entirely appropriate too, formula isn't poison, but if you want to breastfeed know that you can, with support and help.

I was fortunate to visit the new North West Milk Bank this week. Donated breast milk is another option for mums who may not be able to produce their own milk.

Every baby deserves a chance to receive breast milk, it's tailor made for babies, big and small.

And every mother deserves to know that she can produce milk if she wants to and if she is adequately supported and encouraged to do so.

Yes you can give your preemie breastmilk, and there is help to do so. Reach out and ask.

Wednesday, 16 July 2014

Simple Gift for Teacher

Almost 3 years ago I slowly started working on my garden. The first thing I did was put some huge rocks in and develop a rock garden. I had no clue what would work and bought a collection of alpine plants from our local nursery. In the bunch there were two cute little things....sempervivums. I discovered sempervivums for sale at very reasonable prices in Germany and brought 8 plants back with me at Easter. Well I've had a bit of a population explosion, as you can see in this post.

I decided for Joseph's teachers we would repot some of our sempervivums. Dividing them is easy, each offset has it's own stalk and root system. I used peat pots (£1 for 40 at the pound shop), cactus and succulent compost, and some gravel for the bottom which I had in the garden.

I wanted to get back to one main plant in each hole. I have manged to amass a huge number of offsets. What I don't use for gifts will be going to Manchester Friends of the Earth for Dig the City.

 
I wrote a message on a paddle pop stick, then stuck a plastic gem to each stick, then ribbon around each pot.

Hopefully they will be appreciated. I am sure the teachers get overloaded with chocolate this time of year so it's something different, and hopefully they will grow happily in their new homes!



Wednesday, 9 July 2014

Entertaining Angels

Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. New Testament Hebrews 13:2
"Good morning, you look a bit confused, can I help?" the old lady standing at the bewildering ticket machine smiled. I helped her pay for her metrolink ticket and we started chatting. I sat with her on the tram and we talked all the way into Manchester. She was a kind, gentle old lady, reminiscent of my beloved grandmother, with a soft London accent.

As it turns out she was a retired neonatal nurse, she worked at the same unit Joseph was born at some 40 years earlier!  We talked about the differences in neonatal care. She was amazed to hear about Joseph and his birth and progress, and marvelled at the changes in care now. She even knew the head sister from Fairfield when she was training, just a student.

She spoke about her work at Great Ormond Street some 50 years ago, when children with Leukemia were just given blood transfusions. None of them survived. She told a remarkable story about a little boy she met whilst on night shift who wanted to paint. She was a young nurse and her father had given her some watercolours. She gave them to the boy. The next day his bed was empty. He had died. But he had spent the previous day painting beautiful pictures.

This lovely lady was going to meet a friend in Manchester to accompany her friend for a procedure. She revealed that she herself had cancer and had been fighting for 11 years. Truly an angel.

On the way home I waited at the bus stop and along came a girl, with a shaved head, wearing a beautiful elephant skirt and a gorgeous smile on her face. Her arms were about to drop off as she carried loads of shopping.

She had moved down to near where I live to help her grandma. She talked about her hair, it turned out she had had it shaved to raise money for a charity called ActionAid.

I beamed as I give £10 a month to ActionAid. She then said she used to give £5 but had been unemployed for a while so had to stop. When I came home I increased my donation to £15. As  I chatted to the person who took my call she asked me what prompted me, and I mentioned my new friend. She was so suprised, she knew her, and about her plans but didn't know she had gone through with it! She was amazed we had met on the bus!

I was so struck by this young woman's zest for life, her humour and her compassion.  On top of the charity aspect, she donated her locks to children with cancer to be made into wigs My best friend Daniel is always saying I am a stalker. In true stalker fashion I found my new friend!



I am so glad I catch public transport, that I will talk to anyone. You never know who you might meet. Maybe an angel.

Monday, 7 July 2014

Can Feminists Wear Pink?

I have been meaning to post about this for months and have recently read two posts here and here that prompted me to write my own. 



I've been a feminist pretty much since the day I was born. My mum is a feminist, I grew up believing that women had the right to choose what they wanted to do with their lives, to have freedom of choice, a right to earn their own money. I remember learning that my beloved Auntie Con had chosen not to get married, so she could continue her teaching career and I found it horrific that someone would have to choose between marriage and career. I was five. I still feel sadness for her. She had amazing experiences, travelled to London at a time when it was very difficult for anyone from Tasmania to get much further than Melbourne. She went to a garden party at Buckingham Palace. She was recognised for her work establishing a school for low vision children in Tasmania.

My mother has always loved clothes, and always bought us lovely things to wear. I have always loved pink. I remember my first real bedroom, the one after the Womble wall paper, had vivid pink walls and beautiful pink floral curtains, with a white wardrobe with dressing table. Very feminine. I've always enjoyed crafts like knitting and baking, sewing and colouring in.

The thing about feminism is that it shouldn't be anti feminine by definition. And it shouldn't be about pink. Yes the pinkification of everything is a little tedious, that women should have dainty pink tools or want all their kitchen implements pink *hides pink kettle on the hob* is annoying. However my big beef with dainty pink tools is their quality is usually poorer than bog standard tools, and you end up a) paying a "pink" tax and b) having to buy proper tools to replace them. I was bought a "ladies tool kit" for a birthday and have now replaced all those tools with "proper" ones.

I don't necessarily have anything against dressing girls in pink fluffy dresses if that is what they want to wear, and I have to admit I cooed over a baby in a fluffy pink pram today. Joseph had pink clothes including a great pink t-shirt that said "tough enough to wear pink", that he wore to consultant appointments.  If I had a girl she probably would have dolls and pink dresses. She'd have dungarees and welly boots, and trucks and cars as well, just as Joseph has had dolls and stories about girls as well as boys. I'm sure I would have still built a bug house, and helped my daughter collect snails to put in the bottom of it.

The "pink" debate can diminish from the message of feminism.

I don't care if your daughter wants to be a ballet dancer or an electrician, she should have the same rights as anybody else to pursue your dream. If she wants to be a nurse or a consultant she should have the right to be one, and her gender should not enter into it only her ability and aptitude.

Its 2014, and still girls perform less well at science and mathematics. Still girls are expected to do certain things and behave in certain ways, and the pressure is no less for boys. If a boy doesn't like sport, is into quieter pursuits, or is geeky they still are often seen as less "manly" whatever that means.

Feminists can wear pink, or can eschew it. They can wear florals, skirts, dresses or live in jeans. They can be teachers, nurses, doctors, lawyers, engineers, stay at home mums.

Feminism means choice based on your own desires, dreams, interests and abilities, not on your gender.

Feminists can, and do, wear pink. 


Saturday, 5 July 2014

Former Premature Children and School

Joseph started reception in September this year. Joseph had been at nursery since he was 2, and to be honest, I was expecting it to be a little difficult but I wasn't prepared for the reality of school life for my little boy.

It's been widely reported that prematurely born children can "underperform" compared to their peers born at term, and that starting children a year later can help. The reports focus on those children who have effectively skipped a school year, and this is an important issue. If a child is due in November and born in August to me it's clear cut, that child should be offered the choice to start reception in their correct year.

The law states that children do not need to be in compulsory education until they are 5. What generally happens is that child then starts in year 1 skipping their reception year. For most prematurely born children this isn't an option, it's counter productive.

This brings us to Joseph. He was born in May but due in August, he didn't skip a school year, so I didn't apply to the LEA for special consideration. It was clear Joseph didn't have additional needs enough to warrant any intervention or statementing so I sent him off to school, after explaining some of his quirks to his teacher. Only his teacher resigned shortly after the beginning of the school year, and effectively all the information was lost.

We've recently had some information back from school, a communications assessment. My little boy is behind with social communication. He doesn't relate to children in a meaningful way, and spends a lot of his time alone with brief moments of interaction. His gait and his fine motor skills are of concern too.

Holding him back a year wouldn't really have made an appreciable difference, and in fact, what is heartening, is that some of the July and August boys in his class are very similar to him, he is not alone.

The big problem I have come across is the lack of awareness amongst education professionals in our school regarding prematurity. I often think of the 1 in 13 figure of children born prematurely and wonder why this is. But on further reflection alot of these babies are born between 34 and 37 weeks and the impact on brain development is not as marked. The very premature children, on a local education authority level, are spread throughout the country so it's probably quite rare a teacher will have had experience.

School have been great. Once I explained about the research, about what Joseph was experiencing in terms of attention, social communication and fine motor skills wasn't unusual for a baby born at 27 weeks, we started pulling together as a team.

The assessor said to me that Joseph is a very clever, compassionate little boy and just needs some extra help to develop to his full potential.

I'm glad I made the decision not to delay his entry, but I wish it could be easier for him. He has struggled with school, but now, coming to the end of reception, he adores school and has made friends. He is very popular and all the children come and say hello to him, from year 6 down!

In my opinion more work needs to be done to ensure schools and local authorities are aware of the issues, beyond the delayed entry, and are ready to support teachers with a prematurely born child in their class, with the things they need to ensure they excel, to minimise stress for all concerned.

Early Years is a time of learning, exploration, and fun, it shouldn't be stressful.

Friday, 4 July 2014

A Sad Goodbye to Childhood Innocence

Until I moved to the UK I hadn't really heard of Jimmy Savile. I must have seen his picture and maybe seen clips, but I didn't really know who he was, he wasn't part of my childhood. When the revelations broke in 2012 I felt immense sadness for his many victims, but also for all those (and most people did) who had fond memories of his shows, and his sayings, things you can't say now that once you could.....like "Jim will fix it", sayings that had become part of the vernacular.

When I wrote "Jimmy Savile is Dead" in October 2012 I had no idea what was to come.

My friend Jayneen Saunders, the author of Some Secrets Should Never Be Kept told me first. That the man arrested in his 80's was Rolf Harris. I felt sick.

You see my abuse used to happen on a Saturday, very often. I would go home, wash and then have tea and watch Rolf Harris. I found him soothing and comforting, his voice, his paintings, his jokes, his warmth.

I remember one day my abuser saying "he is just like me isn't he?" I stared at him "touchy, feely and loves children". Those words now chill me to the core. I have to be careful not to stray into overthinking, wondering whether there was some sort of real knowledge of each other, although I am sure there wasn't, Bassendean is a long way from Hobart and Rolf had left Australia in the 50's.

When I first moved to the UK I met a Tasmanian lady my age who had married a Lancashire lad. She worked at an art gallery and mentioned she had met Rolf Harris and he had touched her and some of her other colleagues inappropriately. She mentioned the term "octopus" which later emerged in the press and court during his trial.

So the allegations, charges and now conviction weren't entirely a surprise to me. However it's so sickening that it took so long to bring him to justice, that a number of women and children were hurt (many gave supporting evidence in court that wasn't able to be brought as charges as it happened outside the UK) and I am sure there are many other women and children who didn't fully realise at the time that what he was doing consituted abuse, it wasn't just unpleasant or an old man being "touchy feely", it was sexual assault.

For victims today I think there is a bitter taste left for us. Some of us will never see our own perpertrators brought to justice. And some of these trials leave us wondering whether justice is truly being seen to be done. I know Rolf Harris is an old man, perhaps not in best of health, with a wife who is frail. However he paid no heed to the rights of his victims, to their right to body safety. He created a fake persona which enabled him to get away with abusing women and chidren.

He has received a sentence which not only does not reflect the gravity of his actions, but also does not reflect anywhere near the total of years he could have received, even given the law regarding historic crimes, where the sentence applied is the one that existed the time the offences were committed.

My heart goes out to all of us who have been affected by sexual abuse, as a child or adult, whether an unwanted kiss, touch or more.

What happens to our bodies matters. Sexual assualt is serious, it's a crime, and it should carry grave repercussions when it occurs.

Tonight Rolf Harris is behind bars, the Attorney General is reviewing the sentence, and his victims can know that they were believed, their cases were heard and justice was done. To a point.

Sunday, 29 June 2014

Sweet Are The Uses of Adversity

"Sweet are the uses of adversity,
Which, like the toad, ugly and venomous,
Wears yet a precious jewel in his head."
William Shakespeare - As You Like It


As regular readers will know I was diagnosed with Post Traumatic Stress Disorder in 2009 shortly following the birth of Joseph. I was a mess, I had nightmares, flashbacks, was constantly on high alert. In my head I had my childhood and Joseph's confused and was constantly frightened that either he would be emotionally scarred by being abandoned in hospital, or that someone would hurt him now or in the future. It wasn't as "simple" as almost dying myself before he was delivered and nearly losing him.

I do think we are so quick to label condtions. I wonder now if the label "you have a disorder" and the reaction "let's medicate" was the most appropriate one. What I really needed was to be wrapped up in love, and cared for. I needed to heal, and to be reassured that a lot of what I felt was actually entirely rational and I think if I'd had CAT (cognitive analytical therapy) or CBT (cognitive behavioural therapy) earlier, a lot of the protracted pain and symptoms I have had endured, and my family and friends have endured, could have been mitigated. Was my reaction a "disorder"? A difficult childhood, a life threatening condition, my only child in danger? Was it that "disordered" that I be frightened of something else going wrong in my life?

There is no doubt that out of the trauma of premature birth and pre eclampsia so much good has happened to me, that it was heartening to read this article during the week. In it Bob Clark refers to these 5 positive changes found by Richard Tedeschi at the University of North Carolina

• A renewed appreciation for life
• New possibilities for themselves
• More personal strength
• Improved relationships
• More spiritual satisfaction

I'm not quite 5 years on yet. The trauma for me was the separation from Joseph more than the birth or the other events in his stay, this I now know and understand, for to be with your baby is the natural thing, any separation no matter how logical, is deeply damaging for the mother. I believe the baby adapts, especially if attachment is as strong as possible during the stay with good family centred care and most importantly after return home. This is where we need to work hard, to give parents that confidence, and to help them heal when they come home.

I can certainly report that I whilst I have suffered Post Traumatic Stress Disorder, in far more measure have I experienced Post Traumatic Growth. My life now is vastly different than the one before I had Joseph, as anyone who has had a child would report. But my "self", that thing that makes me me is vastly different too. I am more confident, I have skills I didn't have before, and I have all sorts of people in my life I didn't have before.

I am happy, fulfilled and my life has purpose. And I have an amazing family.

Do I still have periods of crushing tiredness? Nightmares that wake me up in fear? Periods of panic attacks? Yes and possibly always will, but I can manage those and I have techniques and support.

And that's the reality of trauma, whilst it can crush you, and bring you to your knees, the most remarkable growth is possible.  Embrace your experiences if you can, get support, and most of all know that so many of us experience trauma and whilst it is hard, and it hurts, growth can happen.

On my other blog I have a fun post about gardening which you might enjoy

Wednesday, 18 June 2014

My Three Babies - Miscarriage Care



Joseph is an only child.

But I've been pregnant three times.

First miscarriage I had wasn't, as far as miscarriages go, that traumatic, in a strange sense. My then husband was unstable and violent, the baby wasn't planned, and he was furious. I spontaneously miscarried. My marriage ended. I was traumatised by it all. The miscarriage was just one brick in a wall of trauma. At the time, it hurt like hell, don't get me wrong, it all did.

My second miscarriage was deeply traumatic. With a new partner, the situation and timing wasn't entirely ideal, and I began miscarrying in the doctor's office having my pregnancy confirmed. This was in Australia and I was a private patient and it was sorted, a D and C and sent home. I had privacy, dignity and warmth. And $1000 shortfall in anaesthetist bills for 20 minutes work, but that's another story.

When I fell pregnant the third time I spoke to my midwife about my miscarriages "oh because they happened in Australia they didn't really happen."

I'm sorry what? I was hurt, scared, upset. And actually in retrospect, I should have been angry.


The thing is, this is largely indicative of how miscarriage can be handled in this country. Practitioners often don't know what to say. "Oh well at least you know you can get pregnant" one said to me. "Well you can go home and try again".

Even worse huge mistakes can be made, catastrophic things happen in miscarriage care that just shouldn't, that are too painful to even write about. 

To a medical professional a miscarriage may just a be a collection of cells, a fetus, but to the vast majority of women a miscarriage is a baby. You already have hopes, dreams and fears for that little being.
I later learned that actually, the fact I had two miscarriages and then early onset pre eclampsia could have been significant.  It's another of the reasons I wouldn't try to have another baby. I couldn't handle a miscarriage as much as I couldn't really handle another NICU stay.

The state of miscarriage care in this country is shocking. That's why I'm joining the Mumsnet campaign to pledge to improve miscarriage care by 2020.

Compassion, counselling, timely care, "caring care", care with real heart as well as good sound evidence base, is absolutely essential.

Miscarriage is brutal. Your body's betrayal, failing what it is meant to do. Don't let the system fail us the same way.

Please follow the link to see how you can help. 


Saturday, 14 June 2014

The Penny Drops -PTSD and A New Song

I remember when I was pregnant having some counselling, and the counsellor said to me, when you have a trauma things will stick in you mind, songs, movies, odd things. And these things will come back to you. I was having the counselling because I was still very upset about my miscarriages and this was causing me a lot of trouble when speaking to health professionals about the pregnancy that was causing me such anxiety.

When I think of Joseph's time in hospital I think of a few songs; Wires by Athlete, Fix You by Coldplay, or The Scientist by Coldplay, also a slowed down version of All My Loving by the Beatles.

Today these photos popped up on my Timehop.

The soundtrack that started playing was "Happy" by Pharrel Williams. Just look at my face, and Joseph's body language and his face. These pictures were taken 6 weeks into our journey. I had hit the wall. I was so fed up, upset, angry and annoyed that my husband took the day off to support me. This is a very un-Corey like thing to do.

Up to this point cuddles were incredibly dependent on who was on. I was never allowed cuddles when Joseph was on CPAP, and time off was often done at times I wasn't in. Not all nurses were confident handling him, and more to the point weren't confident in my ability to handle my own baby. The more experienced ones were fantastic, but they were taking care of sick babies. Joseph wasn't sick by this time, just the interminable feeding and growing.

The thing about neonatal stays is you don't know how long they are going to be until they are over. This was pretty much half way. Our release wasn't til the end of July.

On this day one of the younger but highly trained nurses said "of course you can have CPAP cuddles", fished him out, plonked him on me and left us to it. I even transferred Joseph to my husband's chest as well.

After this I never took "no" for an answer I would challenge respectfully, but honestly. "If nurse X was happy for me to have cuddles yesterday and you're not today, can you let me know what's changed?"

What I realise now was the only time I was truly happy in that time was when I was holding him. And that actually is correct. That isn't wrong. I was a mummy from the moment he was conceived and that came to fruition when he was born. It's correct that I was upset that there were barriers in the way and that at times I was prevented from being a mummy.

What isn't correct is that I still feel that way. It's going now as I realise that a huge element of my PTSD is separation anxiety. Both of us, Joseph and myself, have suffered from separation anxiety. We are both getting better. He has formed attachments with his classmates and his teacher. The problem at the beginning of the school year was that he hadn't learned to do this. Other children did this more quickly than Joseph. And that isn't my fault either. He just wasn't ready as quickly and we nurtured him through it.

I don't need to have separation anxiety now. He lives with us at home. He runs into my arms whenever he sees me. He knows me and loves me as his mother. And always has, and always will.

I don't have to suffer PTSD any more as the trauma is over.

It's going to take time and effort to retrain my brain, and CBT I think will do this. I believe, for the first time in 5 years, that I can be free of this.

And this is why.

Because we're happy. Even at 4.40 in the morning.

Friday, 13 June 2014

Mummy I Just Want to Be Star of the Week

Joseph's passage into school life hasn't been easy. I had given school lots of information, met with the teacher on a home visit, I thought I had done everything necessary to ensure a smooth transition. The teacher resigned two weeks in and we had an unsettled couple of months of supply teachers, then his new teacher started. I stupidly assumed that everything had been passed on to her. Rule number 1 assume nothing verify everything

I found out Joseph wasn't settling one afternoon in November, visiting a school drop in and was told in front of most of the class and their parents. There were concerns about Joseph, serious ones. We had a big meeting which I called, with the teacher, head of Early Years and the SENCO. Strategies were put in place and everyone started to work as a team.

Slowly but surely Joseph started to settle. A big turning point was May when his birthday was coming up he insisted on a party. I was going to just do something special with him, but no, he wanted to invite his friends. Friends. Joseph was finally starting to make friends after months and months of not being interested in the social aspect of school

His party was a roaring success and Joseph was happy. A couple of weeks ago we were walking to school and Joseph and said "mummy, I really want to be Star of the Week". I was surprised, he had never shown any interest in it before. I explained "you will have to work really hard and be kind, and caring to others".

Joseph seemed to take it in. Every week the teacher has had something funny and good to say. The funniest was "Mum mum I have something to tell you. Joseph asked me to read him a story, I was busy and explained what I was doing. He said "oh Miss you are a whingebag". " I was mildly horrified, the teacher went on to say "Joseph where did you get that word?" And I knew what was coming. The teacher giggled and said "he said "I got it from my mummy"" It could have been worse. Could have been you great flaming galah.

Today we picked him up from after school club and there it was, on his t-shirt. "Star of the Week". My lovely little boy who at the beginning of the teacher's year was "difficult, disruptive, hard to manage, far behind the others" is now doing just fine.

Not just fine, he's shining, like the bright star I always knew he was.

So for those of you with premature children starting school here are my tips.

1. Put all key elements of their story in writing
2. If your child has any idiosyncrasies or rituals write them down
3. If there are changes in personnel engage with them in a timely manner
4. Keep believing in your child and fight for them if you need to. 

Thursday, 12 June 2014

Fairfield Hospital - A Reluctant Return

I have complex PTSD. Complex isn't because it's complicated, complex as it has more than one root. I don't particularly like the term because it's misleading. The first stream is the abuse. I have worked incredibly hard in therapy last year, and I am much better. However as I have gone on it's apparent that stream 2 is alive and kicking. The birth of Joseph at 27 weeks, more specifically having a close call with a severe illness myself, and Joseph being so ill too. The most harmful thing about it all was being separated from him, something I still find hard.

Working in the field was at first cathartic, now at times it's painful. It's still very rewarding and I have amazing colleagues and volunteers but it isn't easy. It's not easy for anyone, to be honest. To be exposed to premature birth and sick babies, and their parents and those who are involved every working day isn't easy. But when your mind has wounds that haven't healed it's particularly difficult. I have embarked on medication again, and specific CBT fortunately this time funded through the NHS

My therapist recommended we arrange a trip to Fairfield Hospital. In a sense, this was pointless, in my opinion, as the unit isn't there so what was the point? I decided yesterday, as I had an hour after work finished and before I collected Joseph, to call in.

As the bus got closer to the Gamecock, the pretty pub in my little set of pictures, it started. My hands started sweating, then my neck, then my brow, my hair was feeling sticky. I started to worry about Joseph, Joseph the baby. I got off the bus and just stopped for minute, calmed my breathing and concentrated on correcting the self talk. "Joseph is on a school trip, he's having fun, he isn't a baby! I walked in the main entrance and again stopped and took stock. I popped my head into the shop, looking the same as it every did. Nearly every day I called in there for a drink, sometimes a medicinal mars bar. I haven't eaten one since.

I stopped at the handwashing station and sterilised my hands. Habit I guess, but it is a hospital and it felt the right thing to do. The smell reminded me of all those times, over a hundred, I walked up that corridor in 76 days. I remember the very first time, still as an inpatient, I escorted my church minister down. The return 3 minute walk took me 20 minutes, I had nothing in the tank and was so sore.

What hit me was noone knew me. In those 3 months I was constantly stopped by people, I got to know cleaners, volunteers, staff. Now with no maternity services apart from an antenatal day unit there is no buzz, hardly any folk around. I was stunned to see that antenatal and postnatal wards are both totally unused, padlocked.

And finally, the unit. Also disused, I have readded the  sign at the top of the door as it was blank. The old sign that I hated is still there. I hated being reminded that I had a premature baby, and I felt sorry for the many mothers who had termies. I peered inside. It's being used as a makeshift store room. The dreaded intercom no longer in use. How I hated that button. Waiting for permission to see my baby. Many times staff too busy to answer, me locked out separated from him.

The final picture is particularly poignant. When we were in Fairfield that building was a pub. Before we left it was shut down with "to let" signs on it. I told my husband if I had the money I would turn it into a cafe bar, serving coffee and cake, nice lunches, have it a nice place for people to go. And that's what has happened, without any investment from me whatsoever!

The key lesson I've taken from this is that this place has no hold on me now. I have avoided since Joseph was discharged from follow up. Any medical issues for any of us I have used choose and book to avoid it. Not because it's a bad hospital, but because of my memories.

So many of my memories are happy ones; the day Joseph had his first cuddle, took his first breast feed, his first bottle. The friendships I made, the camaraderie. Yes, there is sad too, babies lost, tears, oh so many tears, anger, frustration, guilt and failure.

But there is joy, so much joy and the joy is in our journey, now over 5 years long that 10 and a half weeks such a tiny part of the Joseph story.

It's time.


Thursday, 8 May 2014

I am 5

I am batman. I love to have fun, I have a wicked sense of humour. I love my watermelon (still) and I love my cat. She even lets me pretend she is catwoman.
I love bratwurst, outside, in the German sunshine. With plenty of ketchup. I love huge icecreams with lots of toppings and sauce. I love to walk on my own but with mum close behind. And I have perfected the innocent look. 


I am my own person. I can make my own fun. A stick becomes a magic wand. A rock becomes my cave. A dandelion is a clock, in the age old tradition. And on a Friday night I like to snuggle with my DS as a special treat.
When I am fragile I still love to cuddle my mummy, and mucky (my crocheted comfort blanket. I love to pull silly selfies with mummy, and I love to snuggle with daddy and atticus. And I still love my sleep as much as I always have.

I am five. 

Wednesday, 7 May 2014

5 Years Ago Tonight - Birthday Eve



I was in HDU, scared witless of what the next day would bring. Not scared of having a needle in my spine, or abdominal surgery. Not even scared of eclamptic seizure, though had I understood the true implications of how ill I was perhaps I would have been more frightened.

No my biggest fear was him. Joseph. Would he survive? Was I doing the right thing? Would the fight be too much to ask? I became a mother that night, before he was born. Prior to that moment I was a pregnant person, but from the moment I was asked to give consent for the caesarean section to save our lives I became a mother, my concern primarily for my child, not me.

5 years ago I had no idea what the future would hold. My obstetrician had nothing but optimism. "The journey will be long, but I have every confidence it will be ok". My pregnancy book, written by Kaz Cooke reassured me that a baby born at 27 weeks had a very good chance of survival. Fitting that tonight Joseph wanted The Terrible Underpants read to him, written by the very same Kaz Cooke.

I had no idea that despite from being the scariest thing that had ever happened to me, pre eclampsia and Joseph's subsequent birth would actually bring so much good. I wouldn't be writing this now, or have my job, or most importantly the beautiful friends Joseph's birth has brought to our lives.

I still have PTSD symptoms to deal with, and perhaps it's the medication allowing me better clarity on Joseph's birth, or maybe the passage of time that makes it all easier.

Tonight I am not thinking of the fear, indeed the terror of that night. I am remembering the kicks I felt. The worry at the jumping of the monitor only to be told it was the baby having hiccoughs. The kindness of all the staff, some praying, some singing, some holding my hand, some talking about sushi. My insistence that I would be walking into theatre despite the catheter, lines and swelling.

It's been an amazing 5 years, with much more good than bad. With triumph over adversity for all of us. With achievements, tears and laughter. Lots of laughter.

Tomorrow is a day of exuberant celebration, of presents and Macdonalds for the birthday boy. And a day to cherish my miracle baby* turning 5.

*All babies are miracles :)

Tuesday, 6 May 2014

The One Where I Have a Dawning Realisation

It was doing Joseph's homework that started it. As he browsed his pictures and calmly discussed each one he saw. "Oh I look weird there, covered in wires and stuff, let's find another". "Oh that one is better you can see my face and there's daddy". "Oh that one is the best, you can see my face and I am cuddling my mummy!"

I took many pictures of Joseph in hospital, and oodles since. I very often just snap him not doing much of anything, even sleeping, or drinking, or eating.



On Thursday Joseph turns 5. And finally, I have realised something. For me prematurity defines his birth. The fact he was born at 27 weeks will always play a significant part in his birthday. For me. And really, for me alone. I replay his birth, the decisions I had to make, those scary first hours when I had had a baby but had never seen him, didn't even know for sure what gender he was.

Nothing will ever make Joseph's prematurity "insignificant" to me. True enough, it doesn't play much role now in my day to day thinking, but I don't think there will come a time when I don't replay the circumstances of his birth and replay those 10 and a half gruelling weeks in hospital. I don't think anyone else really thinks of it much. In an educational sense the fact he was premature does have some significance and at times we do need to "play the premmie card".

However, for Joseph, prematurity is a totally insignificant part of his personal story. Of more significance to him are his trips away, his hobbies, his interests, his fantasies. His batman costume of far more importance to him than his tiny baby hat, that I hold so dear. That fact brings me great joy, that no matter how traumatised and fixated I have been on his prematurity that hasn't affected the way he views himself.

And that is where the healing happens. Yes, I can have my cry, my fears relived, my horror at how short my pregnancy was. That's fine. It will always be part of my Joseph story and that's fine.

But what I musn't do is transfer that on to my little superhero, who knows about his prematurity, understands it, but doesn't overly care about it. It doesn't make him Joseph.



And that's where he needs to be.

Saturday, 3 May 2014

#SelfCareSaturday - Week 1 - Grown Up Colouring In

Welcome to my new and first ever ongoing linky #SelfCareSaturday. For those of us with mental health conditions, self care is an essential part of our management plan. For any one of us though, taking time out to focus on our health, well being and self development is important to remain mentally and physically healthy. I invite all of you to share what you have done this week to take care of yourself.

For the past 3 months or so I have had a flare up of my underlying medical condition PTSD. My main symptoms are anxiety, high alert and over thinking. I have also had long periods of insomnia. Focussing on my craft work is difficult and I felt I needed something I could do to calm my brain down when I overthink.

I was in a beautiful design bookshop looking for presents for Joseph's birthday when I came upon a beautiful colouring in book. I bought it, then treated myself to some good quality felt tip pens and some pencils.

At regular intervals I pick up my materials and do some colouring. Sometimes for 20 minutes sometimes for 2 hours. 


Because of the detail in the book it is a slow process, which is good, as it is completely absorbing.


When I finally finish a page I feel a sense of achievement.

And then I can move on to the next one


 Please link your post below, and share on your social media with the tag #SelfCareSaturday. 

Not Even a Bag of Sugar



Thursday, 1 May 2014

#SelfCareSaturday - Introducing a New Linky

I've always wanted to have a linky, and being nominated for Best Health Blog in the Brilliance in Blogging Awards gave me an idea.

Self care is something that I am really passionate about. As a busy working mum with a young son and a couple of medical conditions it's easy to let life get so busy you neglect yourself to an extent.

So I have decided to chart some of my self care efforts each week and invite you to join me, linking up a post you have already written or write one especially. I will try and have a nifty badge ready for Saturday too.

I love this definition of self care "Self care refers to actions and attitudes which contribute to the maintenance of well-being and personal health and promote human development."

Your post could be about a hobby, a walk you've been on, something you have done for yourself. You could set yourself a challenge. It could be a heathy meal you have made yourself, or an activity you have tried.

I want to hear the ways you take care of your health, well being, and personal development.

I hope you join in #SelfCareSaturday. This week at 8pm I will be around on Twitter talking about #SelfCareSaturday, come and join in!
 

Tuesday, 29 April 2014

Isla - A Tulip Picked Too Soon

Four years ago three special little people were born, Reuben, Henry and Isla. I knew about their birth soon after it happened through the Bliss forums. Their mother was one of the first people I supported right through neonatal care and beyond.

We grew closer and closer as her babies continued their long and complicated journey through neonatal care.

I never met Isla but she captured my heart. Strong and stubborn, she weathered storm after clinical storm. Every day brought a new challenge that she overcome.

However as time went on it was just too much and Isla came to a time where she couldn't fight anymore.

Today on her birthday I wrote "Happy Birthday Isla" on a tulip and let it go down the Irwell.

She may be gone but she lives on forever in my heart and I will never forget.