“Say it’s true, black and blue, I can share your situation
Been holding our emotions back, will only make us cry
If you go, I know, but you know, it ain’t so serious anyway
When the clouds arise we’ll live on Ocean Drive”
I look in my rear view mirror as I am driving and I see Bettina in the back seat, staring out the window with her dreamy look and her happy smile. She is listening to one of her favourite songs ‘Ocean Drive’ by Lighthouse Family* on the radio.
When Bettina was 12 months old we knew she was facing challenges that were different to other children. Bettina found eye contact painful and resisted hugs from her parents. At 18 months we sought a diagnosis, although we had a good idea what the outcome would be (and which was duly confirmed).
We didn’t go to ground when we heard the news; both Joyce and I agreed we wanted the best quality of life we could give her which would be full of love and joy. We definitely had a fight on our hands with the ‘professionals’ in her childhood years. I am glad to say we always won, even though we often had to fight the same battle more than once.
Bettina’s upbringing was not going to be any different from her big sister, but realistically we knew we would need to do something a little extra. Bettina certainly helped us to look at what was important in our world. Bettina – flooding our bathroom and water coming through the ceiling, and stripping my parent’s new bedroom wall paper while we were asleep, called for humour and resilience.
So what does a life less ordinary look like for Bettina?
- Doing things you were afraid of, things you have never done before, or perhaps thought you did not have the ability to do. Bettina works with animals, often as a cook and a caterer. A life with no regrets.
- You are not limited by life’s obstacles – We think Bettina does not see her learning disability as a limiting factor, if anything she is challenging her reality.
- Bettina always gives 100% with everything she does, as if there was no tomorrow
- Taking pleasure from life – Bettina gives double thumbs up when she achieves a new challenge. This may be a complex puzzle, reading, or articulating something she has been thinking about and then putting it into a sentence. (Bettina has a complex communication disorder).
- Variety is the spice of life for Bettina. There is work and fun and often work is more fun for her.
How do you support a person to have a life less ordinary?
- You show you have belief in them – you need to evidence this on a daily basis
- When you love them for being ‘you’ then their life feels worth living
- Supporting someone to live a life a life of dignity, of liberty, and freedom
- Being a safety net for when things go wrong. When they do fail, remember not to be non-judgemental when that happens
- Being a role model. You can not support someone to have a life less ordinary unless you are living a life less ordinary too.
And here are 5 rules Bettina lives in a less than ordinary life:
*Bettina has the best sister a young woman could wish for. Jennifer has bought her a ticket to see the Lighthouse family at the Ipswich Regent Theatre in 2020.
Always choose to heal, not to hurt, to forgive not to despise, to persevere not to quit, to smile not to frown, and to love not to hate! At the end of life, what really matters is not what we bought, but what we built, not what we got, but what we shared, not our competence but our character, and not our success but our significance. Live a life that matters. Live a life that cares…