Back in summer 2014, me and Miss T often visited somewhere that I believe is one of my favourite places on the planet - I rarely feel the feeling of peace and tranquillity that I have in that place.
When we visited again at the weekend, I found myself reflecting on how Miss T has grown up. How things have changed and how that summer back in 2014 was our last summer before we had JIA in Miss T's life.
The extremely talented couple behind Narrow Skies music, Ben and Anita Tatlow, have written an incredible new song to help raise awareness of juvenile arthritis and the UK charity, The JAR Project who are working hard towards finding a cure for JIA.
The song is called Hold On and it so accurately reflects both the courage of children with JIA and all that they go through but is also a story of hope.
These are the lyrics which I have copied below and I have found them to be so poignant and powerful that my eyes well up with tears every time I hear the song.
There is a link to the song below too, but I just wanted to take a few moments to explain why these words and this song are so special.
Ben and Anita didn't receive any specifics when writing the song which is why it is all the more astounding just how perfect the song is.
Firstly reference to "little one" - Trinity was diagnosed with JIA at age 2. It is at around this age that many of the children with poly JIA (5 or more joints affected) and oligoarticular JIA (1-4 joints affected) are diagnosed.
"Your fire will light again" - one of the things we noticed when Trinity was first diagnosed was that not only did JIA rob her of her ability to walk and run and play but her confidence went rapidly downhill for a long while.
She couldn't understand (and was too young at the time to discuss it meaningfully with her) how she had gone from being able to do things to suddenly being unable to.
It really was like her sparkle had faded. This young child who everyone used to comment about how smiley and happy and delightful she was - suddenly had a whole big burden to deal with at such a young age and that was reflected in the change we saw in her demeanor. It has taken years but I've recently noticed a confidence and spark coming back again.
"I see the strength within you, the courage that you hold" - it sure takes a lot of courage to go through injections that you know will make you feel sick and will be painful as it goes in, week after week after week. We're now up to 210 injections of methotrexate, a chemotherapy drug used to suppress the immune system in order to suppress the arthritis.
Throw in blood tests every 2-8 weeks too which don't always go to plan and yes that really is a whole lot of courage that's required.
Its tiring having JIA- the disease itself can cause tiredness, and the medication can too, and the ongoing appointments and therapies and treatments which are not always close to home so can be tiring getting to them. That takes strength to keep going. To keep doing those physio exercises when all you want to do is rest.
"With all the things you learnt along the way" - I always say to Trin that although I would do anything to take away her JIA, it has actually made her a stronger young lady than she even realises right now.
She has adventures ahead of her and this beautiful song reminds us of that and not to ever lose hope.
Hold on - lyrics
Hold on little one, your fire will light again Hold on little one, your fire will light again When your glow seems to be fading, we try to fan the flame To take away these burdens, to shield you from the pain But Oh, I see deep within These embers burn brighter than they seem Hold on little one, your fire will light again Hold on little one, your fire will light again I see the strength within you, the courage that you hold Over mountains, across oceans, adventure waits for you! Oh, the places you’ll go! With all the things you learnt along the way Hold on little one, your fire will light again Hold on little one, your fire will light again
Gosh that title is a bit of a mouthful for this recipe isn't it - "Eastern spiced - but not spicy - savoury mince"! But I guarantee you that when it comes to the eating, this recipe makes the perfect sized mouthfuls for all the family to enjoy.
And it's so quick and easy to make that it has become a family favourite. After a busy day at work I can get home and get this on the table in well under 30 minutes!
The inspiration for this recipe lies in fusion cooking. It has been inspired by Grandad's savoury mince which Richard grew up with in his household, and some of the flavours and spices that my late mum would use in her Persian cooking.
The wonderful thing about her cooking was that it was full of aromatic herbs and spices but without actually being spicy so my kids have enjoyed these kinds of flavours from a young age. Having never met their gran (my mum) I have wanted my children to know a little about their heritage so I make sure we set up the traditional 'haft-seen' for Persian New Year each year in March, and making food that reflects their cultural heritage but in a fuss-free and easy way is another way for them to learn about their heritage.
'haft-seen' (meaning Seven S's) for Persian New Year.
When I say this recipe is easy, I mean it. It is packed with goodness as beef is naturally rich in protein and is a source of iron which helps reduce tiredness and fatigue. You could easily use lamb in place of the beef mince which is also packed full of goodness. For example did you know that:
Lamb provides seven vitamins and minerals that support good health and well-being (niacin, vitamin B6, vitamin B12, zinc, potassium, phosphorus and pantothenic acid).
Beef provides eight essential vitamins and minerals that support good health and well-being (niacin, vitamin B6, vitamin B12, zinc, riboflavin, iron, zinc, potassium, and phosphorus).
It's also one of those recipes that you won't need to get the scales out for. After all, after a busy day at work the last thing I need is a complicated recipe with weights and measures. So everything is measured in spoons and cups with no weighing scales in sight.
Ingredients for the savoury mince:
2 tsp rapeseed oil
1 pack of lean mince beef (I used a 400g pack of mince beef but you can use a 500g pack if that's what you find in store or you can choose minced lamb instead - this recipe works brilliantly with either!)
1 apple
1 mug diced frozen onion
1 mug frozen sweetcorn
1 mug frozen peas
3 tablespoons of raisins
1.5 tsp turmeric
1.5 tsp cinnamon
1.5 tsp ground cumin
Ingredients to serve:
Pitta bread or wraps
Fresh coriander (optional)
Yogurt
Dried mint
Method:
1. Pour the rapeseed oil into a saucepan and add the frozen onion. Fry until golden. You don't need much oil at all just enough to stop the onions from burning.
2. Add the mince meat and using a wooden spoon mix it with the onion. After a few minutes it should start to brown.
3. Next add the spices - turmeric, ground cumin and cinnamon - and mix into the meat.
4. Add in the sweetcorn, peas and 1 chopped apple followed by the raisins.
5. After a few more minutes turn off the heat and it is ready as soon as the meat is cooked thoroughly.
6. To make the mint yogurt to serve with this, it is simply a case of adding a sprinkle of dried mint to plain yogurt.
7. Served with toasted pitta bread cut into pockets and wraps cut into quarters and garnished with coriander if desired.
I love that this dish is packed with flavour from the tasty meat, the flavourful spices and the naturally sweet kick that the apple and sultanas give it that it needs no added salt or sugar at all. The peas and sweetcorn add a really vibrant splash of colour to the dish too making it look fun for the family to enjoy.
My kids absolutely love meals that involve the 'putting together' aspect - so they were thrilled that they got to stuff the pitta pockets themselves with the meat and yogurt dip and likewise for the wraps.
Here's a quick video to show just how much they enjoy this #MeatMatters meal:
And of course I'm a happy mummy because it is being able to make quick and nutritious recipes like this that reduce the "mum guilt" that so many working mums feel - It can be tempting to resort to ready meals and takeaways due to lack of time when we get home from work and need to get a meal on the table quickly. With a recipe like this I know that my kids are getting a balanced tasty meal packed with the nutrients their growing bodies need and it's on the table in under half an hour.
This recipe is an entry for the #MeatMatters Challenge, sponsored by Simply Beef and Lamb. Learn more about the benefits of cooking and eating beef and lamb along with recipe ideas and inspiration here: https://www.simplybeefandlamb.co.uk/
I was sent a £10 voucher towards ingredients for this challenge.
Today is the first ever WORD day - a day of awareness for children and young people living with rheumatic diseases (including Juvenile Idiopathic Arthritis which Miss T has suffered from since the age of 2).
One of the things that I've found myself feeling somewhat angry and upset about is that when I was diagnosed with JIA back in 1987 (or Juvenile Chronic Arthritis as it was called back then), the main thing people would say to me when I told them why I was on crutches was "Arthritis? but I thought only old people got arthritis".
It made it a lonely place to be as a 10 year old with such a lack of understanding and awareness in the world around me.
Fast forward to 2015 and Miss T's diagnosis of JIA. I had truly hoped things would be different in the 3 decades that had elapsed since my own diagnosis. But the main statement we heard time and time again in response to hearing of Miss T's JIA...you guessed it..."But I thought only old people got arthritis!"
That is why the introduction of WORD day is so important. It is not only to help all those suffering day in day out with their condition feel a little less lonely and a little more understood but crucially with greater awareness comes quicker diagnosis and treatment, and receiving prompt treatment can make a huge difference in the longer term outcomes for these children.
In my own case, it was over a year until diagnosis and by then the damage was done resulting in me needing a hip replacement operation. We know Miss T was one of the lucky ones with prompt diagnosis and treatment enabling her to live a much fuller childhood than I had. But JIA still throws its curve balls at us, whether it is the sickness and side-effects that her medication causes, the threat of regular childhood illnesses like chicken pox landing her in hospital, or the ongoing mystery foot issue that no-one seems to be able to explain.
So today we celebrate the bravery of these children, we stand with them to show we care, we shout out to the world that children and young people get rheumatic diseases too!
If you want to show your support, join the #WordDay2019 tweet chat between 6pm and 7pm (GMT) TODAY (18th March 2019) @wordday2019 on twitter.
If you want to find out more about Word day have a read of this brilliant blogpost by Simon Stones.
After making my healthier flapjack recipe, this recipe was supposed to be another variation on healthy flapjacks.
They turned out far more soft and chewy than planned so I don't think I can call them flapjacks really.
With no refined sugar, they are sweetened with banana and raisins.
Ingredients:
250g oats
3 bananas (300g when peeled and mashed)
50g coconut oil (melted)
1 tsp vanilla extract
Half a tsp bicarbonate of soda
30g cocoa powder
100g dried fruit soaked in 80ml boiling water
Method:
1. Preheat oven to 180c. Grease and line a baking tin (I used 23cm x 27cm).
2. Mix together the bicarb, cocoa powder and oats.
3. In a separate bowl mash the bananas, add the vanilla extract, coconut oil and the dried fruit which has been soaked for a few minutes in 80ml boiling water (pour it all in including the water).
4. Then mix together the wet and dry ingredients. Press it into the prepared baking tin.
5. Bake in the oven for 25 mins.
I love to attempt making healthier versions of my favourite foods. Just over a week ago I got a phonecall at midday from Miss T's school...she'd had a bad fall and injured her ankle quite badly.
When I went to collect her from school during her lunch break she was worried about missing out on dessert...which was flapjacks that day.
We took her piece of flapjack home for her to eat at grandads house that afternoon but it made me realise that I never knew how much she loved flapjack.
I decided to make my own but with a few healthy twists...taking out the refined sugars and replacing butter with coconut oil and rapeseed oil.
Ingredients:
100g coconut oil
400g oats
95g rapeseed oil
80g dessicated coconut
150g raisins, sultanas or dried mixed fruit
100g honey
86g Apple puree
Method:
1) grease and line a baking tray (I used size 27cm x 23cm) and preheat the oven to 180c.
2) In a pan melt together the coconut oil, rapeseed oil, honey and Apple puree. Then add in the oats, dried fruit and dessicated coconut.
3) Mix really well and then press into the baking tray.
4) Bake for 25 minutes at 180c.
When I made this I forgot to add the honey and Apple puree into the oil mixture so I had to add it in after but it still worked out ok.
It made quite a crumbly flapjack so next time I think I'd experiment with more Apple puree, or coconut oil and perhaps without the dessicated coconut because not everyone likes coconut as much as I do.
