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.