Thursday, 25 September 2014

A Brave Boy's Dream: Loom to the Moon & Blue Skye Thinking

During the more recent days of my recovery my hands have been relieved of their stiff and swollen appearance and with this has come great relief.  Whilst I do not have the freedom of movement to crochet as yet, I do have the ability to Loom Band.

This has become a major craze here in the UK and I know that many of you dear readers will share in my enthusiasm for cheap, accessible craft for children... yet, shake your head at the endless trail of loose bands, snapped or complete that is present along any route of creativity... or is that just my messy children!?! 

Recently, I read the powerful story of two brave brothers - Jesse and Skye Hall.  Skye suffered from the same kind of brain tumour as Ashya King whose treatment has been covered by the media over the past month. So very sadly, Skye lost his battle and died peacefully at home on 29th August 2014.

During his illness, Skye had a dream... 

he wanted to Loom to the Moon

Reading this story and sharing it with my children has prompted awe, many heartfelt tears and inspiring conversation.  I do hope that many of you take the time to read about Skye's story and the wonderfully inspirational Blue Skye Thinking Charity created and the Loom to the Moon mission in his name.  The primary aim being to break the World Guinness Record for the longest loom chain and to raise money for the charity.  The Guardian wrote an article here which has more information too.

We have been working on Loom Band chains as a family and will send them off to Skye and Jesse's parents to help them achieve the dream.

If you are inspired to help with the Mission and / or donate, please do so. 

I so hope they manage to Loom to the Moon.... and beyond.

J9 x

Tuesday, 23 September 2014

This Too Shall Pass

I logged on just after tea tonight and have spent the last couple hours reading a few blog posts, checking my ridiculously overfilled email and generally reintroducing myself to the way of the laptop having been absent from it for the summer.

In the main part, it has been enormously pleasant to see gorgeous posts depicting the continuing passing of seasons, beautiful photography or stunning creations... but if I'm honest, for the first time in a long time, whilst sharing in these moments through Blogland - I felt completely inadequate.  Like reconnecting with the wider world and their accomplishments diminished mine and highlighted my lack of achievement.  I am in no way seeking to ridicule any post whatsoever, more highlight the mindset that I fell into whilst reading them (a reflection on myself - alone).

In short, my soul accomplishment in September thus far has been one of existence; of going through the motions, trying to find comfort in routine and battling real ill health.  My children are well fed, watered, clean and cared for - main job done, but I have failed to complete much else (and I do not exaggerate).

The summer holidays passed in a happy blur - genuinely.  My pain increased each day but we were content.  Pushing through to achieve these happy times and moments to remember is so worthwhile but for me physically, there is always a price to pay.  The Hubby is still recovering from his Achilles rupture (and still in that big boot) but is beginning to weight bare.  This has meant we didn't get a break away this year, nor a defined period of relaxation and I think as the new month rang in and August ebbed away, my own strength began to disappear even more than over a normal summer period.  No worries, I thought - the children started back to school on the 2nd then I can recuperate.

Too little too late I fear as a serious rheumatoid flare took hold.  I have been on high dose steroids for the treatment of the flare now for 10 days (which I had tried unsuccessfully to manage through pacing alone for the 2 previous weeks) and I am slowly recovering.  Only once, when I was first diagnosed around 4 years ago have I suffered to this degree.  It has crippled my body and weakened my resolve... I have really struggled and it has called me to evaluate so many facets of life and existence.

Thank goodness for Mothers.  My mum arrived 8 days ago and took on 'the home' and 'school runs'. For the next 6 days I was bedridden - in complete agony, until the steroids properly commenced their work.  I am slowly recovering and allowing myself to rest completely.  My mum left again today and I will manage the morning school run if nothing else... I will tick that box.

When so much of my current identity is linked with my role as mum - how awful does it feel when I can't fulfill those needs?  Hideous.  The rational brain says "Anyone can get ill" and of course, I know this to be true.  But living it with time to think and pain that saps any strength you can muster is a real challenge.  But I am on the road to recovery from this flare.  It has also meant referrals to more consultants which I have avoided for a few years so maybe this will be a timely review.

It wasn't my intention to write this post, it was simply going to be a "summer catch up to follow" kind of post, but it has flowed from my fingers. I guess it is cathartic and I'm just gonna press publish and go with it warts and all.  There are no ta dahs to share, no exciting projects to tell you about or even pictures to go with these words.

If there is a reader out there who is questioning their purpose or is jaded by their aspiration for constant perfection.  Know that you are not alone and that sometimes real life is hard.  And trust in the timeless reassurance that whatever you may be going through, however you are tested.

This too shall pass.

J9 x