> The Beesley Buzz: May 2019

My favourite place - 5 years on

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.


Hold on - a new song by Narrow Skies for #JIA

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

Linking up with Raisie Bay