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.