Engage brain before opening mouth

I am very fortunate as I can probably count on the fingers of one hand the times when someone has said something negative to my face about Daisy, and even those times the intention was not spiteful, it was more a case of the person who made the comment not thinking it through and quite clearly being from a different value set to me.  Like the nurse, who in the middle of the night, as she brought in yet another IV for a screaming Daisy, turned to me and said, in a very matter of fact way "do you ever think that Daisy just shouldn't have been here..."

The one that I think about a lot was born out of ignorance and sexism and a whole range of values that just don't feature in my world - and it was meant kindly...I was picking up my youngest son from school, having made the usual mad dash home from the hospital where Andy and I had swapped shifts so that we could do the whole parenting by rota thing we had off to a fine art when the children were a lot younger, and I was making small talk with one of the other waiting mums.  I updated her on Daisy, this was the time before she developed full intestinal failure and TPN became part of our lives but we were still struggling with so many hospital stays and unknowns, and I told her that she was life limited and that was why she had been referred to the hospice from such a young age.  And out of the blue, very matter of factly she said " that's such a shame, I suppose at least she's not a boy, that would have been worse"...... at that moment the children were dismissed from their class and I was left to pick my jaw up from the ground.

What had she meant "at least she's not a boy", was it really in her eyes the fact that an imperfect son was a more cruel blow than an imperfect daughter...where did all that rationale come from.  Was I really hearing from the mouth of a reasonably intelligent woman that the life of a son ranked higher than the life of a daughter?

Her comment - made over 5 years ago now still plays on my mind.  She is long gone, moved out of the area with her 3 perfect sons, I don't think I would even recognise her anymore but the comment still hangs in the air.

Just because she is disabled, just because she has a learning disability, just because she is life limited, just because she is a girl - Daisy's life is no more and no less than anyone else.  She has as much to give in her own way, we have as much to learn from her as any other child.  She has made her mark on this world in such a significant way - she is my child, her worth is not based on her gender, her disability is not her identity.
She is Daisy, and like it or not, she's here to stay.

Happy International Women's Day by the way!


  1. What a very odd thing to say. I just don't get that at all, and surely not that anybody could think that??! I just can't think of any logical explanation for what she said - not that I'm trying to make excuses for her. Some people are just plain.... weird?!

  2. People can say such awful things, whether intentional or not. People just don't understand unless they are living a similar life and in a similar situation. With the TPN and intestinal failure some people have said to me that I'm lucky because I could eat what I liked and not gain weight, even though most of us (including me) can't eat at all and are dependent on TPN which saves our lives but is also slowly poisoning our bodies.
    I wish people would think before they speak, and wish they could understand just what it is like for people like us.
    I can't believe that lady suggested this happening to a boy would be worse, it's awful whatever gender.

  3. I wonder if what she really meant was that caring for a severely disabled girl, as a female, is that much easier than caring for a similarly disabled boy, and that the bond you have with Daisy is of greater quality than it would be if she was a boy. It says a lot about how she feels about boys and what sort of mother she would make for a boy. I hope she doesn't have any.

  4. Wow, bizarre! We are all life-limited, just that some of us are forced to accept those limitations sooner than others.. As a teacher, a class of girls would be much easier than a class of boys, but as a parent of both genders, their value is equal. I find that a shocking statement, but at the same time it's also a really good reminder of the fact that we all have our own very individual perspectives on everything. I've often found it useful to remind myself that others don't think in the same way that I do and that we're all a product of our own experiences..

  5. I wonder what on earth she meant? What a ridiculous comment Steph. Yet another example that those who don't understand are the ones who are truly missing out in life. Much love, Hayley x

  6. That is a very strange comment to make - the one about it being 'better' that D was a girl and not a boy. I never understand families where the boy is seemed to be more precious than the girl. D is just as valuable as any other child, whatever her gender, needs or prognosis. I heard some corkers about my late (learning disabled) sister. Some people asked me what her 'mental age' was. For some reason, that really annoyed and upset me.