A rare life – day 22

I ran across this video  and had one of those “yes!” moments.

The last sentence sums it up perfectly: “Rarely can a response make something better; what makes something better is connection.”

I get a lot of sympathy for Miss Z, and for us as a family. Sometimes, I am feeling a bit sorry for myself and the “oh poor you, how awful!” comments are appreciated, if only because it helps to know that others recognise that I’m going through some tough times.

But most of the time, I honestly don’t know what to do with the sympathy. How do I respond to someone agreeing with me that my life is currently a bit shit?

And I’m not denying that it can be a bit shit. Truly, 2015 was one of the shittiest years on record. So, you are all welcome to sympathise with me that over the course of that year my beautiful girl was seriously ill on numerous occasions – to the point where her doctors were constantly wondering if she would recover or not.

No response to “Miss Z has been referred to palliative care” was going to make the situation better.

But it also sometimes feels as if sympathy is used to intentionally fuel a disconnection. If you sympathise with my “terrible situation”, it reminds you that your child isn’t receiving palliative care. Does being sympathetic of Miss Z’s situation make you feel better about your own life?

The other side of the sympathy coin is that some people seem to not want to mention Miss Z at all. I’m never sure if they feel sorry for me and don’t want to mention the “tragedy” in my life that is having a disabled child, if disability makes them uncomfortable so they avoid it, or if it is a case of not really knowing what to say. I understand about not knowing what to say – I’ve never been particularly eloquent – but it certainly doesn’t help to form any sort of connection with me if you’re pretending that one of my children doesn’t exist…

Writing this blog on a daily basis throughout February has really made me realise that despite all these unique challenges we face, a lot of our lives are pretty ordinary. My biggest stress at the moment is trying to get two kids ready for school every morning. My greatest joys are when my girls achieve things that previously seemed unobtainable. My biggest relief is to be able to have a nice dinner out with my husband and leave the kids at home with a good carer. My biggest worry is how to balance any semblance of a career with raising two children. None of these things has to do with Miss Z having a rare disease.

Yes, there are a lot of differences, but there are also a lot of similarities. So lots of opportunity for a connection.

Give empathy a chance.


No sympathy required



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