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Noah and Gracie

Just one family story about how the charity Together for Short LivesWS361_butterfly_and_blossom has helped them – if you’d like to support children’s hospices you could hold a Butterfly Tea Party in June.

Noah and Gracie

It’s hard to know where to start, so maybe the beginning is good. I was so excited when I found out I was pregnant with Noah. I’d always wanted to be a mum. Noah was born on 31 October 2006, a healthy little boy. As a parent you have so many dreams for your child, I wanted Noah to have all the things I didn’t have and so much more.

Noah developed as a normal little boy; he started to walk when he was 11 months old. But when Noah was about 13 months we noticed that his walking pattern didn’t seem quite right, he seemed to drag his left leg slightly. I explained my concerns to my health visitor and she referred Noah for an x-ray, this came back all clear. No one could explain Noah’s unsteady gait. When Noah was two and a half he had a little fall, as I picked him up to comfort him I noticed that although he was crying, his eyes had a slightly glazed look. When I went to put Noah down, he couldn’t stand on his feet and had no mobility at all. I’ll never forget that day; it would be the day I really knew something serious was wrong with Noah. Whilst Noah was on the waiting list for an MRI scan he continued to have these episodes and his walking deteriorated. One morning, as Noah tried to get out of bed he couldn’t walk at all. I took him to A&E in a panic and he was admitted for further tests. After two days in hospital the consultant asked to see us. As we walked into the room and saw two other doctors, we realised that something was wrong.

It’s amazing how your whole world can change within seconds with just a few words, the words we heard ‘Noah has a very abnormal brain scan’. The doctor explained that Noah had a condition called Leukodsytrophy, She explained that Leukodsytrophy is a life-limiting condition. I remember feeling physically sick and just sobbed and sobbed. I was seven months pregnant with my daughter at the time. We were told that there are around 40 different types of Leukodsytrophy. Noah’s tests were sent away to a specialist in Holland who diagnosed Noah with Vanishing White Matter Disease, a form of Leukodsytrophy.

Vanishing White Matter is a very rare condition which affects the white matter on the brain. It is genetic and runs in the family, and both Greg and I were carriers of the mutated gene. Symptoms generally appear in a child who has been appearing to develop fairly normal. The condition means that Noah will lose each of his abilities and will become physically disabled. A striking feature of the disease is that the symptoms get worse slowly for the most part, but there are episodes of rapid deterioration that follows an infection or mild head trauma. Noah could partially recovery following these episodes, or the episode could lead to coma and death.

We decided to have our daughter tested for the condition and were told that our beautiful little Gracie also had the same disease. As far as we know Noah and Gracie are still the only two children living in Northern Ireland with Vanishing White Matter Disease so we have to travel at times for treatment in Holland.

Although our life is not how we ever expected, we are truly blessed with Noah and Gracie in our lives.

Noah is our little Superman, a true hero to us and all who meet him, he is passionate about life and everyone who meets him comments on his infectious laugh. He is the happiest little boy I know, and even though he is ataxic at present and suffers from regular pains in his legs, he never complains. He is a joy to be around and at times puts us to shame with his ability to live life to the best of his ability.

As you can imagine it’s very difficult trying to keep a six and a half year old safe when he actually believes he is superman!

Gracie is now three years old and a little princess who also loves life. She is so affectionate and I truly believe that when she was born she was our little light, at a time that seemed very dark. She really helped us to get though.

We now just have different hopes and dreams for our children, and we will continue to trust that God will give us the strength to get though each day, because tomorrow is not guaranteed to any of us. We prefer to live one day at a time. We love Noah and Gracie with all our hearts; they have amazing strength and have touched the lives of so many people who have met them. We will never give up hope and will continue to pray for a miracle or that a cure maybe found.

No, our life is not as we imagined it to be but what we do have is faith, hope and of course an abundance of unconditional love within our family.

via Noah and Gracie.

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Did you know?

Who came up with Christmas cards?WS319_ceramics

Which country leads the way in greetings card design?

How much money goes to charity from Christmas cards?

What’s the average cost of a greetings card?

Answers to the above and more in my latest video – Did you know?

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Staying within the lines – or not?

“Coloring is an activity that we tend to associate with children. As we grow older, we put aside our crayons and colored pencils in favor of more respectable writing utensils like pens and highlighters. However, it turns out coloring can be beneficial for adults — namely for its de-stressing power.”

via Coloring Isn’t Just For Kids. It Can Actually Help Adults Combat Stress..

Of course – anyone who loves Phoenix Trading knows this already and if you’ve had one of our colouring in tablecloths you’ll know that you probably spent more time colouring in than your children did…at least that’s what happens in my house! I think we adults sometimes need an ‘excuse’ to colour in, it’s not something we see as an adult activity, there are always more ‘important’ things to do – but with one of our tablecloths, or maybe a frieze then we have the perfect excuse. And of course, any such creative activity we can do with our children has to be a positive thing for us and them surely.

Here are a few of my favourite products:WS173-Hearts-Butterflies

1 – Colour in hats – we have two sets: the first contains a mermaid, a butterfly and a fairy, the second a chief, space cadet and king. Both illustrated by Amanda Loverseed.

2 – Colour in map of the British Isles – educational and destressful this comes in a presentation tube too so makes a great gift, and is also illustrated by Amanda Loverseed.

3 – Colour in friezes – I love the animal train, though we also have farm, princess carriage, under the sea and a nativity one at Christmas. I think these are particularly great as they come in six pieces and can be coloured individually and put together later to make a large frieze if you wish, but they look great on their own too. All beautifully illustrated by Claire Winteringham, Alison Hullyer or June Armstrong.

I do get parents tell me they will get frustrated if their children colour outside the lines (maybe I just have too many ocd friends?)…my response – buy two, one for you, one for them!

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Grammar Girl : Why Did People Stop Saying “Thou”? :: Quick and Dirty Tips ™

(I thought this was fascinating, a friend shared it via her FB page Barefoot in Belfast, she sells gorgeous children’s books by the way, and I thought with all the romantic poems we often write in cards it was interesting to see what happened to thee and thou, this is only part of the article, see the link at the end for the full thing, well worth a read!)

We know language changes—we don’t say thee and thou anymore—but have you ever wondered why? Often, it’s not clear, but there’s a particularly satisfying answer when it comes to these two pronouns.

A couple of weeks ago, after I talked about how the pronoun you fills so many roles, I started wondering why we stopped using thee and thou.

It turns out that English used to have formal and informal pronouns like many other languages. German has Sie and du, French has vous and tu, Spanish has usted and tú, and during Shakespeare’s time, English had thou and you and thee and you.

Thee and Thou Were English’s Informal Pronouns

Since thee and thou have survived mainly in religious and poetic writing, you may be surprised to learn that thee and thou were the informal pronouns. Yup. You was formal, and thou was informal.

In a book called The Personal Pronouns in the Germanic Languages, Stephen Howe says that in the fifteenth to sixteenth centuries, thou was generally used to address someone who was socially inferior or an intimate. For example, parents called their children thou, and children called their parents you, but then the use of thou sharply decreased in the seventeenth century, starting in London. Thou was used the longest in areas that were farthest from London, and in fact, it’s still used in a few regional dialects including those in Yorkshire and Cumbria, which are both quite a bit north of London.

When Social Status Became Unclear, People Started Using You More

The reason people stopped using thou (and thee) was that social status—whether you were considered upper class or lower class—became more fluid during this time. You had social climbers striving to talk like the upper class, so they used you all the time instead of thou, and since you couldn’t be as sure as you used to be about who was in what class, it was safer to use you instead of thou because you didn’t want to risk accidentally offending someone in the upper class by using the wrong pronoun. You didn’t want to call someone thou when you should have used you!

via Grammar Girl : Why Did People Stop Saying “Thou”? :: Quick and Dirty Tips ™.

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The Art of Handwriting – Is it Lost?

Cards lost art of handwriting

Have we lost the art of handwriting? I hope not. With social media being a part of our lives that it never was when I was young I see changes in what we teach our children. Quite rightly they learn how to touch type on a qwerty keyboard from an early age. But they still have their handwriting book too. How important is handwriting in a technical age? Does it matter anymore?

Despite the common perception that ‘no one sends cards anymore’ the opposite is true. According to a recent survey 95% of British households still send cards. So surely it’s important that what’s written in them is readable? Or is it?

I did a little research on the lost art of handwriting.Phoenix Trading

This article on The Art of Handwriting about letters by artists is worth a look just to see the handwriting. I’m not an artist so my handwriting leaves a lot to be desired but I just adore neat, artistic handrwriting.

Here is a very inspiring TED talk on the lost art of handwriting – you might be inspired to pick up pen and paper after listening to these shared memories.

Now, going back to my earlier complaint about poor handwriting, there might be an answer in this. A hi-tech pen that could improve my handwriting!

…and if you’re still not sure you need to bother brushing up on your handwriting then this 8 year old has a very good reason why it’s important – how else will he fill in his contract to be a major league player?!

So, is the art of handwriting important or not?

Does it matter if my scrawl looks pretty or is it enough just to be readable? It’s a well known fact that sending handwritten cards and notes has a positive impact on someone’s mental health. So perhaps I shouldn’t get too hung up on how good or bad my handwriting looks but worry more about if I am writing enough. After all the only way to improve my handwriting is to practise, practise, practise. I no longer have a handwriting jotter like my children at school so perhaps my best practice is to send more cards and letters.