Acceptance

“Allow yourself to be where you are”

As a Carer, who are we? What is our purpose and identity? It feels like a lifetime ago that I thought about and planned things like dinner parties and social outings, hair-cuts and lazy Sunday ‘sleep-ins’. I know and appreciate that this generally comes hand in hand with having been blessed with children, but as a parent and caregiver when do we get this back? When do we see that glimmer of light for things to return to as they once were? When do we get a full nights sleep without having one eye and ear open in case of a vomiting episode, seizure or escapee? When do we allow ourselves to just let go and find ourselves again? This is a question I’ve been pondering for a while now.

I do not have the answer yet, and maybe I will never know when this time may be. The important lesson I have learnt and continue to remind myself of is that all that matters is this moment. This exact present moment is all we have and anything else is just a thought. Yes, this can be hard to swallow as we sit in the darkness watching helplessly as your precious little being works through a soaring temperature, shivering in their bed, when you are pulled suddenly from a deep (and much needed) slumber to the sound of vomiting and aspiration or to that feeling and build-up of a seizure where you find yourself helpless and answerless. How did we get here?

Who am I? The life I once had, those many moons ago are a distant memory. A life once full of friends, nights out, shopping sprees, late nights, lazy mornings, last minute dinners out, weekends away, the dream house to purchase, a career to chase and a vision for the life we take for granted. From experience, I can tell you- nothing should be taken for granted. I have learnt that friends may not have been true friends, nights out were fun yet the morning after- not so much! Shopping sprees fill a void then leave us empty, late nights and lazy mornings take up precious time to experience the wonders of the world we are blessed to be a part of. The dream house- is but just a dream and just a house and that career is just a job!

What truly matters more than anything we experience in our life time is the experience of love and gratitude. The key is to love with our whole heart and appreciate all we have, no matter how little this may be, appreciate and be grateful.

Over the past few years where I have been dragged through extreme darkness, bumps and turbulence, there comes a corner. There comes a glimmer of light and with each experience, comes realisation and the increasing awareness for this moment. I cannot control my life, but navigate it through the journey handed to me and I shall navigate with complete compassion, empathy, love, gratitude and with that I discover acceptance.

I accept my life as it is now. I accept that I am in a process of discovery and do not hold the answers. I cannot change my beautiful children and the challenges they face but hold belief and faith that all will be okay.

I am thankful.

“Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance,
chaos to order, confusion to clarity.
It can turn a meal into a feast,
a house into a home, a stranger into a friend.
Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow.”
- Melody Beattie

Ruby Choose-Day!

"She would never say where she came from
Yesterday don't matter if it's gone
While the sun is bright
Or in the darkest night
No one knows, she comes and goes"

As the Rolling Stones so famously recorded fifty years ago last month, about a free spirited woman. Ruby Tuesday is a song that has been repeating in my auditory sphere recently and as I listen to the words- they mean so much more to me than that of one free spirited woman groupie!

Not only does the name 'Ruby' obviously hit home with me and bring up some deep, guarded emotions, but the words and melody just bathe my soul and being in the deep rooted belief system I have that 'all will be okay', and to be free and live in peace is the ultimate goal. Not in a sense of taking off in a caravan wearing tie dyed clothes and burning incense, but a deep connection with myself. Having an understanding that no matter what the external body may look like or have challenges with, arms and legs which move involuntarily, a mouth that does not utter words in the 'usual' sense. Legs and feet which may not support you when upright and the need to rely on someone else for every aspect of daily living and survival on earth. Having and gaining this realisation that regardless of these differences and challenges in life, life is still good. Life is still a blessing and so much true life, peace and freedom can come out of such adversities.

"Don't question why she needs to be so free
She'll tell you it's the only way to be
She just can't be chained
To a life where nothings gained
And nothings lost, at such a cost"


So where am I going with this blog today? To be honest, I am unsure, however when I feel the need to write, I just write!

Last week we received an updated report from an MRI carried out on Ruby's Brain, Spinal Cord and spine. The last was in 2011 when life was somewhat turbulent and I was in a very dark place. The purpose of the MRI is in preparation for spinal surgery coming up later this year to fuse Ruby's spine together. Not a nice procedure by any means and has taken a lot of thought and deep questioning of 'why'? The short answer is, to give quality of life in the upcoming years. To allow organs the space to work how they need to, for breathing to be less laboured, for sitting and standing to be more comfortable and for Ruby's overall comfort. After getting to the hospital and being told that there had been an error made with the paperwork sent out, that Ruby would need a General Anaesthetic for the MRI to be conducted and this would be another date, you can guess that I wasn't leaving without at least giving it a go! So, I had a little chat to Ruby and explained that we want to avoid the anaesthetic and we will make her positioning as comfortable and supported as possible, with relaxation music and me by her side throughout the 45 minute procedure. She listened! My little Ruby Star did it- surprised the medical staff yet again. She isn't your 'usual' 7 year old child I explained!!!

Then the day came where the report was ready. The time where we would get to hear all that is going on in my little girls body and why for the past six and a half years she has been handed such challenges that most people do not experience in a life time. Guess what- the MRI had nothing! The brain is 'normal' the spinal chord is 'normal'. The spine itself has a left curvature (which we knew!). Other than that doctors can not explain what is going on!!

You see, to me Ruby is whole. Ruby is perfect and Ruby is healed. Ruby is here to give me a kick up the butt and has created a life I never dreamt of. A life where I found myself, a life where I am able to put my vision and values and mission in place and with that take both my girls on the journey to continue on this path of knowing what true 'free spirit' is.

"There's no time to lose", I heard her say
Catch your dreams before they slip away
Dying all the time
Lose your dreams and you will lose your mind
Ain't life unkind?

I believe these words are not only about Ruby but written by Ruby also. So with this, take the words as you may. It is not 'Ruby Tuesday'  but in our eyes 'Ruby Choose-Day'. What do you choose in life and how do you intend to live, to be free, in peace and believe that all will be okay?

We're in this together. xx