I recently read an article in the Guardian about what it’s like to grow up with a disabled sibling. It was a sobering read with children testifying about the pressures and the way they felt they missed out on attention. There was no bitterness – just an acceptance ‘that’s the way it is’. Before Smiling flower was born we were told to expect a child who was severely disabled – emotionally, physically and intellectually. It is hard then, as the article points out, not to exclaim over and celebrate every physical milestone, every leap of understanding, every warm embrace. She is so far removed from the bleak predictions that her development feels like a saying I once heard about stars: the darker the night, the brighter they shine.
Baby boy on the other hand is achieving his milestones with effortless ease. As we have had little concept of ‘normal’ his daily progress is also met with a fair amount of astonishment. To see him racing up the stairs with such confidence and steadiness seems truly exceptional to us. He plays by himself in a way that we never imagined children did, as Smiling Flower has always needed a bit more direction and encouragement. At just over 1 year old, baby boy crawls at lightning speed, climbs with no fear and giggles with every step we help him take.
I can’t imagine a son bringing more happiness than ours does, he is simply a sensational bundle of easy going gorgeousness. We love him to bits and I am sure he knows it. But the article did make me wonder; do we, and will we always, give the same praise, the same step by step encouragement to our son as we do to Smiling Flower? Will he have his own blog to document all the achievements and emotions that accompany his growing up? Probably not – although he will have some star appearances on here. Will he feel the weight of being a sibling to a child with additional needs? We had always wanted two children but it is a comfort to think that a signing sibling will potentially be an extra friend for smiling flower.
The article also discusses this friendship aspect, and describes the love between a brother and his sister (who has cerebral palsy) as: ‘a rare love – enduring, binding, reconciled. In many ways it’s the sort of love we all seek to know.’
Obviously sibling relationships don’t always work out but both Pete and I have experienced the joy of all they can be. I have an older brother and I love him in a way that I don’t love anyone else in my life. Sure, he used to feed me evil cocktails made up of random pantry ingredients and perfected the Chinese burn on my wrist. But, it was him I ran to in the school playground when I needed a hug and he never chose looking ‘cool’ over sorting out his little sisters latest trauma (my most memorable ‘Miranda moment’ being when a game of kiss chase ended in a tumble in which the chased boy broke his nose and I felt convinced all hope of romance was gone from my life for ever) So my brother and I always felt close and I feel I can talk to him about anything. It is no surprise then, that I hope that as our two tiny ones grow they will learn this love – a love that protects and laughs and inspires deep friendship.
I don’t know if that will become a pressure, but we will do all we can to make baby boy’s life carefree and to help him understand what a precious and unique gift he is. Ultimately, as long smiling flower and her brother can go down the pub when they are 18 and moan about the moments when Pete and I got it all a bit wrong – well, I think we’ll feel we also got it a bit right…
(If you want to read the article (and comments which are just as interesting) the link is
Other resources if you find yourself in a similar situation to us: www.youngsibs.org.uk – for siblings of disabled children. NDCS also provide support to siblings of deaf children. And the website www.special-needs-kids.co.uk/siblings.htm has an excellent list of resources.