Sometimes I worry what kind of world our daughter in growing up in. A fast-paced, outcome orientated place, in which having a disability is just plain HARD!
Will she always be labelled as ‘the disabled girl’, or the ‘deafblind girl’?
I, for one, have a major problem with labelling and stereotypes.
For instance, I cringe when I hear someone say “the Down Syndrome boy”.
Thousands of babies around the world are born with the genetic disorder that leads to the diagnosis of Down Syndrome (or trimsomy 21). In fact, it is the most common genetic disorder in the human species.
All of these babies who grow up into children and adults, are unique and wonderful individuals!
I’m not saying that there aren’t a number of distinguishing features of the condition. But please do not label a child with so much potential for happiness and success in life by his condition!
I know a couple people who have Downs and they are the happiest, brightest people!
There’s something to be said for innocence, and unbridled trust in and acceptance of others.
As parents, and a family as a whole, we too have felt what is like to be different and to stand out. Our youngest daughter falls into the ‘disabled’ category.
I must admit it was not easy coming to terms with that, using the terminology at first, or even applying for disabled parking privileges.
Five and a half years ago our daughter was clinging on to life for what seemed like an eternity.
There’s no doubt in our minds that she’s a miracle and meant to be with us, with our family.
That doesn’t mean that she’s ‘perfect’, ‘fine’ or even ‘normal’, but what defines those words anyways? Are any of us?
Our Brielle is an extremely active, happy and adventurous five year old girl who happens to have quite a collection of disabilities resulting from her extreme prematurity.
I’d rather see her disabilities as a side-note, a description of her abilities and development, rather than a defining label.
I’ll never forget a few years ago, a woman looking at my daughter in her stroller in the elevator of Seattle Children’s hospital and asking me “what does she have?”
I think my face said it all, but I remember muttering something to the effect of “lots of things”.
My daughter is beautiful and she’s also a little rascal, and yes she does have an A4 list of diagnoses and conditions. It’s fair to say she has multiple disabilities.
But she is learning to live her life despite of those and in her own way and time.
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