http://huffp.st/h7IFWT2
"Lovely" I said to myself. How sweet. You see they came as a " package deal" explained the engaged sister in the article. The three of them having become firm friends after the couple began dating. "...a wonderful sister and caring fiance" I thought.
However the more I considered the article content the more uncomfortable with the situation I became. Reading between the lines the young man was "taking on" the sister and her additional needs and the writing was very much in praise him for being prepared to do so. Hmm. I can't help but smile at the happiness of these three young people ( it's not creepy Rachel it's not creepy Rachel) but I still didn't like it. The fact that the fiance knew how important his future bride's sister was to her and had therefore planned how to incorporate her into their future is kind and thoughtful, and in reality a huge commitment, not to mention the added pressure on their relationship. So I had a bit of an "oh" moment. It hit me that this was the opposite of what I think/hope/wish for my daughter and son. If Nate's syndrome hadn't brought with it such a profound intellectual disability ( and the unlikelihood of becoming a teen let alone an adult) I would have loved to see his independence nurtured, for him to be assisted to make decisions and watch his personality develop whilst giving him the space to do so, watching carefully from the sidelines naturally. I want my daughter to have the chance of her own life too, one at least partially removed from her brother and his care needs. I want a life of adventure and excitement for her where she can stretch herself and also be valued. As I watch her grow into an intelligent and responsible young lady I see endless possibilities. I want her to make choices in life based on her own hopes and dreams, not what our family may need.
For as long as her brother is with us I know they will have a uniquely special bond which in no way do I intend to discourage, but be his carer? Nope. Just no.
Should something catastrophic happen to both myself and my husband please don't look to her to provide Nate's care. You can probably ( make that definitely) guarantee she would demand to have a say in how his care is organised, or do the organising herself, but don't expect her to do the day to day shitty stuff, take that literally if you like.
By all means she can be the fun sister. She of almighty cuddles, weird dancing and loud music. She can be chief hand and face stroker, toy buyer, den builder and Natie calmer. She can lead him on sensory adventures. She can take on my mantle of queen ranter and designated eye roller.
But she is his sister.
She will not be his carer.
( Although she will likely have something to say about that)
In our seven years of living with Nate her needs have taken a backseat.I miss football matches and school events, or become stressed and uncomfortable when he screams and shouts. She's had birthdays and mother's days in hospital. School holidays in hospital or at appointments. Day trips cut short or cancelled. One parent in attendance where there should be two. She knows more about tests, scans, and medical devices than most adults. She fetches, carries, waits and helps where she can, tolerating it all without ( much) grumbling. Most of the time I feel pretty lucky she's not a total dickhead as a result of everything we've been through as a family, and then she does something particularly arsey and I'm simply relieved she's behaving like a typical pre teen girl.
And yet ( just to be completely contradictory) I nominated her for a local carers award the other day even though I detest the idea of her being thought of as carer...
I recognise this life is all she knows but I can't help wanting something different for her. However I must appreciate that this is what I want, what I think she needs, what I envisage for her future.
What if I'm wrong?
What if all she really needs is to be close to him?
All I can do is ensure she has a choice.
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