Friday, 3 October 2008

"Do not pity me!"

Get It Down; 31 for 21

Over the next 30 days or so, I hope to write a lot about Thomas, but also about how it feels to have children with 'special needs' in my life - those I parent and those I meet on a regular basis, or have met and was touched by...
I will talk about my pregnancy, Tom's birth, his diagnosis, his early childhood and development, and what life is like on a daily basis; I would also like to talk about my feelings and opinions on how disabilities are handled by the community that surrounds me, by society at large, and by the government - although I am NOT particularly politically minded, and do not wish to embark on some kind of vendetta against those who do their best to rule our country. I desperately want to see attitudes to DS and other disabilities change, because in spite of society's concerted effort towards so-called 'inclusion', what I see around me is anything but inclusive a lot of the time! And this needs to change - for the good of society itself, as well as that of those who are 'different'.

As you can see from the above photo, Tom and I are incredibly close...and always have been. Cliche as this may sound, he is a precious treasure which God has entrusted to me, and I am honoured and humbled to have been chosen to be his mummy. I know Mark (Mr Wibbs...!) would completely echo this, and agree that we are immensely blessed to have Tom in our lives.
In the early days, we were faced every day, sometimes several times a day, with having to tell people that Thomas had recently been diagnosed with Down Syndrome. The most painful thing about that was having to watch people's facial expressions change, to eventually settle on something that looked like pity tinged with sadeness... Especially slightly more 'senior' people. Many times, I had people kindly and compassionately touch my arm, and say "oh, I'm sorry"...
I don't think I can find words adequate enough to describe how angry, and upset this made me feel!! Even from very early on, even when I was still in shock from the diagnosis, my whole being wanted to scream at those who were sorry for us.
I even remember saying to some people, "No, don't be sorry! We're really NOT sorry; we're a little shocked, but mostly quite excited... And certainly not upset or resentful. God knows what He's doing..."

6 comments:

  1. I cant wait to read them all! I think this society has worked hard to try and combat racism (with mixed results) but we have still not got where we need to be with regard to people with disabilities. This may be largely due to the media presenting a front which either includes no-one with special needs or treats disability as the subject of pitying documentaries.

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  2. I'm so glad you are writing about this! I've been amazed at the backlash against Sarah Palin here in the States for actually giving birth to her Down Syndrome son. I think having a child with disabilities was always terrifying to me, but thanks to people like you, I've come to realize that there are so many blessings in most any circumstance. I appreciate so much your honesty and courage in talking about it without glossing over. You are inspiring.

    Oh -- also -- I read your blog every day, but never comment. So sorry!

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  3. I just wrote almost the exact post! Come on by and visit. I'm on the 31 for 21 train!
    I think you said it better tho. :)

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  4. u know what rachel.... I think I am truley blessed to have been able to get to know all 3 boys! after all if it wasnt for me knowing thomas unfortunalty I would have probley been one of "those people" that see downs syndrome to be awfull!! I cant imagen that now! xx

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  5. oh anonymous ia clair btw! xx

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  6. Clair - I know it was you, silly! I could tell from the eccentric spelling ;c)

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