Saturday, 23 March 2013

Easter Bonanza

We've been very quiet in this little corner of the blogosphere of late - for many reasons, but we are back now and what better way to come back than with a chocotastic Easter bonanza of a post!

We have are just about to go to hospital for William's annual transplant review. Many readers will remember that William had a small bowel transplant in 2008 and that food and eating is a huge part of our life. He wasn't allowed to eat till he was 4 and now eats somewhat irratically and sporadically and still depends on tube feed. One of the best ways to entice him to eat is to cook and play with food and, thanks to the fantastic folk at Lakeland  who always come up with the most amazing idea and products for children to cook and experiment with, that's just what we will be up to this Easter. Everyone is getting home made goodies.

One of our favourite things to make are cake pops - they are so easy in this fab cake pops maker.  Cakes in 5 minutes :).  It was lovely and easy for Wills to do.

Making the cupcakes 

Decorating them

and testing :) 

Not only have we made cake pops with them, we have also found that a batch with warmed golden syrup on top and some vanilla ice-cream makes a great and very fast pudding. I've seen some fantastic, artistic cake pops and it would be a great activity for any school holiday. Also great for summer school fetes.  William's teachers loved the batch we made for them at Christmas.

Wills gets very stressed about going into hospital, especially when he knows it will involve unpleasant and painful procedures. We are distracting him by beginning our great Easter Egg make. Wills really enjoyed pouring and painting the chocolate.

Lakeland have a fab range of Easter and Chocolate making products, including a really nifty little microwave chocolate melting pot and some yummy hot chocolate spoons which we are going to make over the Easter holidays. I have some ideas for those - some of which involve things like marshmallows but I'm also thinking of ways to add some special ingredients for adult only drinks...Bailey's, Brandy.... hmmmm.... watch this space.

Monday, 31 December 2012

Happy New Year

I have been very quiet on this blog this year I know and I'm sorry for that. It has been one of those years! However, I do fully intend (and promise) to resurrect this little space of the blogosphere in 2013. Wills and I have both had our health challenges this year and it has taken me a while to get back on track and into stride, only to be knocked down again. We are putting all this behind us now and looking forward to a much more productive and consistent 2012. We have got lots to share with you and have had a few moments to play and experiment with some fantastic bits and pieces we want to tell you about and we look forward to starting afresh later this week.

In the meantime, we wish you a very Happy New Year. xxx

Monday, 10 September 2012

Paralympics - Inspiring a generation

I have been very quiet on the blog of late and I am sorry for that. Things have been a bit up and down for Wills over the last year and, sometimes, you just need a break from things. But, we are back! There is lots to share with you and I promise to post every day to catch up with things.

What a summer it has been! We have had an incredible time at the Paralympics.

Last Monday, we watched the athletics and saw the amazing Mickey Bushell get a gold medal in the 100m.

William was a little tired and overwhelmed by the huge crowds in the main stadium.

But very much enjoyed the experience too!

The paralympics have helped Wills to understand his disabilities. He hadn't really seen himself as 'disabled' but is at the age now when children begin to get the level of self-awareness needed to see where they are the same and different from others. It was going to happen sooner or later and what better a time for William to understand a little more about his cerebral palsy and what it means for him - at a time when he can see that he can be a paralympic athlete and a hero!!

These games were always meant to inspire a generation and this is exactly what they have done for Wills. He was inspired by the sport he watched and chose to take up archery! We went along to watch some of the archery at the games. William was captivated! The GB mens team had a very close match and Wills was on tenterhooks watching the pull and then looking up to see what the score would be.

We have found a wonderful archery club for Wills who are pulling out all the stops to adapt to his needs. More about that on Saturday.

Right now, I am watching the end of the Olympic 'Greatest Team Parade' with tears in my eyes. These are tears of emotion for every one of those athletes - especially the paralympic athletes and their families, knowing all they have been through to get where they are right now. I have tears of sadness that it is all over. Above all are tears of joy for my son and for the way that, right now, most of the people he meets see him as a potential athlete and hero and someone who could achieve whatever he sets out to achieve. Much as he has inherited a legacy from the athletes he has seen on the TV and in the stadiums this summer, I hope that the world inherits this new understanding of disability and that my son remains a potential hero in their eyes from now on and beyond the immediate wake of the games.  He is already a hero to me and always will be!

Thursday, 26 July 2012

Our dream holiday

It has been another long while since I blogged for which I apologise. I promise I will get back into the flow and so much has been going that I really want to share with you.

Last year, I wrote a blog outlining my wishes for my family, and for myself too. My biggest wish of all for the whole family was to go on a holiday as we had never been away together since William was born, nearly 8 years ago.

For anyone who doesn't know William's story, he was born with a genetic condition (yet to be fully diagnosed - we know he has a protein missing in his cells but the detective work is still ongoing). This led to cerebral palsy in his legs, a form of 'high functioning autism', deformed feet and a bowel that didn't work. Among too many painful procedures to count, and long months in plaster casts, William had a small bowel transplant at the age of four, in 2008 after having spent 80% of the first four years of his life in hospital, resulting in his sisters having to live away from their home and friends with their Grandparents. When a family is that broken apart, things can never be exactly the same again and so any happy times we can share together are not only real treasures but deeply healing.

William's transplant gave William his life and a much better quality of life than we could have dreamed of but he is still dependent on several medications and a feeding tube for 16 hours of the day. He has also had his fair share of setbacks - typically occurring when we least want them, such as throughout summer holidays and the last big set back appearing out of the blue on December 20th resulting in yet another Christmas in hospital. His mid to long term future is very much uncertain. 

Last week, our dreams came true and we finally got to have a seaside holiday together.  

The children were given permission to take an extra week off at the end of the term to go on a very special holiday. Thanks to the amazing Luke Tillen and his wonderful Torbay Holiday Helper's Network (THHN) we've all just come back from our very first family holiday together. It was absolutely amazing. So much more than my dreams ever told me. I don't want to bore you with an itinerary of everything we did but it was full of the most magical and deeply treasured moments you could ever wish for. Moments like the first day when William asked me what the noise was. When I told them it was seagulls he said he had always wanted to hear them in real life because he had only heard them on his Thomas DVDs, mainly watched in hospital. (We do often go to Brighton for the day but you really hear the gulls in the evening when the day quietens down). 

Gulls became our friends throughout the holiday and we enjoyed feeding them Cornish pasties on the beach when we had a day in 'Faith's Beach Hut' - the most beautiful hut you could imagine and a place that could so clearly enable us to imagine the child for whose memory it was built for - a pink loving little girl I am sure and one who loved life and was loved by all. Her legacy was alive in every second we spent in her world. 

We also fed the gulls a little of our 'Famous Hanbury Fish and Chips' - although not much because they were the best we'd ever tasted. We were also treated to the best cream tea we'd ever had at Angel's Tea Rooms. I've never been offered such a wide choice of scones! I had no idea what to choose but I think I made the right decision in the white chocolate on - with home made jam and literally lashings of clotted cream. Hmmm! We stayed in the Ashley Court Hotel, as guests of the owners and Wills made good friends with Steve there. 

We also enjoyed exploring Kent's Cavern caves, Babbacombe Model Village, Babbacombe Cliff Railway and the Cliff Railway Cafe and Bygones, Victorian street in Babbacombe. 

Watching the children playing on the beach, hearing William describe the feeling of sand under his feet and the feeling of the waves pulling it back beneath him for the very first time, being relaxed with meals provided (and the washing up done!) so I can fully enjoy my children between William's treatments, being outside all day and seeing new things all the time and seeing the faces of those who made it possible and how pleased they were we were getting so much from it - all of these memories are unique and priceless. Whatever happens to our family this year, next year or any time now, we'll have these memories and nothing can take it away, not matter how difficult and traumatic things can be. 

The wonderful thing about THHN is that  many people give what they can - be it a week in their hotel, a fish and chip meal, a cream tea or a free pass to their attraction. Put all this together and a family gets the holiday of a lifetime! This concept has really inspired me. 

Many families like ours have had to face a huge cut in income due to it being impossible to work full-time and look after a sick child. In these cases, THHN make grants to enable travel to their holiday. I want to add my little bit into the puzzle. Having seen how people can give what they can and, together, give something amazing and this is what we are asking you to do now.  If you enjoy reading my blog, please help us to give other families the holiday we have just had by giving up just one ice-cream or extra round of drinks from your holiday or summer day out and donating the money towards a holiday for a family who, right now, can only dream of being able to get away together. You can donate by visiting our just giving page here. Please re-post this and spread the word. Just think how much we could help THHN to give others the magic we've had if we, and everyone we know, and everyone they know... gave the price of one drink or ice-cream!