Victoria

Updates on Victoria Lily Joy van den Broek, born 120705.

Tuesday, March 21, 2006

is or has

It sounds somehow worse to say Victoria is a downs' child rather than that she is a child with downs syndrome. In heaven Victoria will be Victoria, without chromosomal restrictions. I suppose it doesn't make any difference to some people, but to those who care for a person with down syndrome, I have a feeling it does.
The 'portage' lady came today (and told me why the name..... it is because this idea originated in a place in America called Portage!). It was a good visit. She is a Christian too and very sensitive to our partic. unique learning environment - particularly keen to set goals which can be achieved given our current educational framework. Most excitingly Victoria is looking like she is ready to start copying (she already waves sometimes when we do) and therefore some of our earliest objectives will be signing. We dont' do any yet because all I know is what is on the video of nursery-rhymes (much of which doesnt' have much practial application!!).

4 Comments:

  • At 8:55 AM, Blogger Sylvia Lowery said…

    I agree about the term has Down Syndrome, I always prefer people to say Alex has Autism, rather he is autistic. The disability isn't the person, and in heaven we will all have new heavenly bodies and minds.

     
  • At 5:19 PM, Blogger Ruth said…

    Personally, I don't mind being called 'a cystic' because it is part of who I am - part of me. If I didn't have cystic fibrosis then I wouldn't be who I am today.
    But one term I don't like is the term 'disability.' It makes me feel inferior, somehow. Also, in many ways 'disabled' Christians are more privileged. For example we have a better hope in the future - we are going to enjoy our new bodies even more that 'normal' people because (in varying degrees) we have realised how rubbish our earthly bodies are. Maybe (correct me if I'm wrong) we have more (certainly different) chances to experience God's grace. Another thing that I have realised is that I don't take as many things for granted anymore. Now, I enjoy the days when I'm feeling great because I know how rubbish it is to wake up day after day feeling lousy. I can assure you that I don't always live like this (there are always days when I think that 'it's not fair') but I thought it might be a bit helpful for you to see a bit of how I cope with my 'disability'.
    Lots of love
    Ruth F <><

     
  • At 9:18 AM, Blogger Tracy said…

    I remember reading a Joni Earikson book a LONG time ago and one of the thoughts which stuck with me was that we are all 'handicapped' in some way and the advantage of APPEARING so is that people are a little kinder towards one! I certainly have found that with Victoria's problems I have had rare opportunities to see the hand of the Almighty doing things which were well beyond our power (like keeping me from becoming a 'basket case'!!!) and the 'ordinary' things of health and development are more a matter of prayer than they ever were with the other children. I looked at Victoria this morning and wondered how I ever managed to raise 10 children without knowing ANYTHING about the development process! Hope you enjoyed Ireland, Ruth. Thanks for your insightful contribution - I still have so much to learn.

     
  • At 6:44 AM, Blogger ~*Radonna*~ said…

    When my son was first born I could not stand it when my MIL said he's a Downs baby.
    I was new to this beautiful world of Down syndrome and I didn't know that there were Political correctness or any of that I just new it didn't feel right because he wasn't a Downs baby he was MY baby. He was A BABY first and formost. It didn't make sense to define a child by one aspect of what they are. Having Down syndrome did not totally make up Kaden and putting that first Down syndrome baby or Downs baby made it seem that Down syndrome defines the child. We are ALL unique being! All designed perfectly the way we are suppose to be. Kaden is Kaden first and he has Down syndrome just like he has Two brothers and a family that love him. Down syndrome is not a word that makes me sad. I do not wish it away. I would be afraid that taking away Down syndrome might take away that laugh or that sparkle that makes my Kaden who he is, BUT I do not want that to be the ONE and ONLY thing that people see when they look at him or talk about him. I want them to see the precious child he is first.

     

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