Friday 21 October 2016

Thank you and Goodnight...




This week a very lovely lady that I know died. She was 42, a mother, a wife, a daughter and a professional. Her worklife was devoted to supporting and helping adults with learning disabilities- ensuring they had a safe home, access to work and an environment that met their needs. Her home life was one of happiness - she had longed for a child and had 3 years ago been been blessed with a beautiful little baby. She was a vivacious, enthusiastic, hilarious, dynamic, intelligent woman - her company made you feel confident, heard, understood and, as one friend described it, lighter.

When my daughter was diagnosed I sought out those who I had faith in, those whose experience or understanding meant I could talk to and who I believed would give me solace in our time of need. I will never forget the advice she gave me. She told me to just carry on as normal - to treat her like anyone else, not to suddenly see her as 'different'. Instead to embrace any of her nuances and expect nothing less than I would have done when bringing up my eldest. If my eldest got to have swimming lessons, do that with her. If my eldest sat on the step when she misbehaved, so should my youngest. She told me never to be embarrassed, never to worry what others thought/think, to focus on our road ahead and keep walking towards our goals.

I listened, digested & followed her advice and I truly believe my family is healthier for it. What she taught me was acceptance, not tolerance. She showed me that diagnosis is positive and it's not the label that counts but how you approach it. I wish I had let her know more vigorously what an impact she made on my life, her words entirely changed my approach and my reaction to our news. For the short time I knew her, she altered the future path my family would take and there simply aren't enough adjectives to describe the gratitude I feel for her wisdom and advice. It seems painfully unjust that her entire family is now bereft of such a lady. It made me realise how fortunate we often are as women to have these encounters, these friendships and how, in such a short time, we can share so much.

So thank you, thank you, thank you. Every conversation we had changed my perspective and opened my eyes to the very real possibility of hope and happiness. I wish that your time on this earth had been longer - you gave so much to so many and I know that you will always be remembered. 

Goodnight my friend xx

Thursday 6 October 2016

Dear Kindness...where did you go?




Dear Kindness 

"No act of kindness, no matter how small, is ever wasted." Those words were written by Aesop, an Ancient Greek writer who lived in the 6th century BC in Athens, Greece. It's true isn't it? An act of kindness, whatever that looks or feels like, is profound. It can be life changing in fact. So I'm wondering where you've gone? What happened for you to abandon us? or perhaps, what have we done to sacrifice you?

Over the last two years, specifically since 20 August 2014 (the day my daughter was diagnosed with a genetic deletion), you have become one of the most significant words in my life. I've clung to your importance, I've sought you out through professionals, friends and family. I've been disappointed when it feels you're absent, when I've heard people use painful words to describe individuals like my child. When I read a letter from a mother who lost her child to suicide, begging for you, for kindness from others. When I watched a documentary (A World Without Down Syndrome) that suggests the medical world wants to eradicate a type of person based on their genetic profile. I wonder when we lost all sense of direction and became so cruel - surely it's not who we want to be or should be. 

Kindness, to me, you are about suspending judgement - thinking before we speak, choosing our words, our language carefully. No-one wants to live in a hyper-sensitive world, where we cannot talk openly but we must also recognise the power of our words. They can damage us, they can limit us and, sadly, on occasions they can destroy us. Kindness, you are generous, warm, patient, forgiving...so often these days we choose aggressive, blunt, curt and pernicious language to assert ourselves. Why? Why have we cultivated this behaviour? From the snappy 'I don't care' slogans on our t-shirts, to our keyboard warrior antics on social media. 

Kindness, you invite us to take a breath, to pause, to consider others. To take the time to be thoughtful and just. I've been acutely aware of that need to be gentle, to be respectful, since my daughter was diagnosed. Ive seen people become uncomfortable by her (she's 3), yet still I have witnessed people feeling unsure or uneasy by some of her mannerisms. It would take nothing just to be kind, a few minutes of your time to smile, to say hello 50 times if necessary. Remember Aesop's words, no act of kindness is wasted. Truly, it is not.

Every action has a reaction, every word has an effect, every wound leaves a scar, every smile lifts the spirits and every act of kindness has an impact. In a world, which at the moment seems bereft of positive stories, we need you Kindness...we need you to shine a light on us all. We need to bask in the glorious truth that kindness has power, it breaks barriers and it unites us. So, Kindness, if you can hear me, please come back. 

Yours sincerely,


Bibi xx

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