A Voice for Choice

"I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved"

These words replay over and over in my head and bring me to tears whenever I hear Mark Schultz's song, dedicated to his daughter. The words ring loud and clear about how he and his wife did not let what other peoples personal opinion affect the way they would see their daughter and what her life would be like.

Having stepped away from a really wonderful couple of days spent with like minded, passionate and inspirational people I find myself full of enthusiasm, motivation, warmth and strength to start making some vital choices in my life. I was invited to attend a 'family leadership' event, which in itself was quite confusing as to why I needed this. I am by no means a 'leader' for my family in the sense of being authoritarian or in charge, and have no intention of becoming this. What I did learn is that a leader is someone who practices 'Radical Solidarity'', expressing the concept of something which is extremely important to them in an integrated manner. Having often felt quite alone in the grand scheme of things I have come to realise that a leader does need to ask for the help of others to achieve their desired outcome, for you can try and try to do it alone, but will probably burn out along the way. What is important is finding those who will ride the waves with you, accept some days they will crash down on you and push you under, but that they will calm and let you ride the current and move forward, little by little.

I am, talking specifically about having a child with quite challenging needs, and am always taken back as to how many other, very 'normal', every day, clever, professional and gifted people are in the same boat. Prior to being blessed with Ruby I would never have imagined the sudden turn my life would have taken. I do not dwell on the fact that my life is a little more challenging than most, because everyone has their own 'stuff' to deal with, but what I have come to realise is that people need to understand what my family and I have gone through, and why I have made the choices I have. For it is only through knowledge and experience that society can start to change how it see's the world of 'disability'....there, I said it! BIG word for me to use as I believe that no matter a persons physical, mental or emotional state, EVERY SINGLE PERSON HAS SO MUCH TO OFFER and should not be seen any differently to anyone else. They should not be spoken down to or ignored for not having a mind of their own, they should not be pitied or cast aside.

Ruby has many, many friends who together just light the skies around them. Bringing joy, happiness, opportunities, meaning and passion to all in their presence. Our angels are not a 'label' or 'medical condition' they are not 'disabled' but very much abled. It's all about the rhythm of life and just going with the flow. Appreciating every single moment you share together, the people who are drawn in to our families because they too share the same faith and believe 100% in the families' values and vision. They believe in the choices families make and embrace and encourage them. For many parents who have a child with extra challenges they too are faced with their own challenges of asking for help, opening up and believing in themselves. I personally believe that it comes down to our assumptions of 'what would society think'? The truth is society are generally wanting to help and understand more, but are struggling with their own choices and beliefs. Until we each start to voice our choices and take a stand for what we believe in and want to see evolve and flourish in the world around us, nothing will change.

“You may think that in life, a lot of things happen to you along the way. The truth is, in life, you happen to a lot of things along the way.”

So whether you are a parent going through turbulent times of hospital stays, specialist appointments, therapy sessions, school choices and battling with the various 'systems', or a single career minded individual, I urge you to start making your OWN choices and voicing them. We each need to build upon ourselves as human beings to take charge of our lives, physically, socially and emotionally, mentally through knowledge and spiritually. Gaining an understanding of who we are and what we long to stand for. For me, I have learnt, so far, that I am a good mother (again, I am not one to big talk myself, so this is good therapy for me!) and I will do anything to advocate for my precious girls. I have learnt, only recently, that I can express my personal beliefs to others, and it's OKAY! I have learnt that no matter what any neurologist, metabolic professor, gastroenterologist, geneticist, ophthalmologist, physiotherapist, occupational therapist, friends and family say, that is their own opinion and they have absolutely no idea how things will pan out. After recently receiving some grim news from a professor, with no solid evidence, he finished with 'Only Ruby holds the answers to what will happen' and this is so so true.

All I can continue to do is be the best advocate I can be and voice my choices loud and clear!

In the words of Cat Stevens I shall finish with:

"Ruby be my love
you'll be my love
you'll be my sky above
who'll be my light?
you'll be my light
you'll be my day and night
you'll be mine tonight"