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I Sometimes Feel Disconnected

Posted Oct 31 2012 12:00am
Sometimes I feel a disconnect from the Down syndrome community in the way I feel, or describe, Kayla having Down syndrome.

I don't say, or believe, that Kayla (or "kids like her") is a special angel sent from God, nor that she is a gift from God. I am religious, and I do believe in God, but Kayla is simply my child; a human being. She isn't a gift from God because she has Down syndrome, but she is a gift because she simply exists...she's a gift from God because childbirth itself is a miraculous event ... but she is a gift from God in the same way that Lucas is ... because they are my children.

She is only 9 years old ... she hasn't done anything (yet!) quite so marvelous to be given angel-like status. She isn't Mother Theresa! Having an extra chromosome doesn't make her an angel. If I promote the "More Alike Than Different" campaign how could I call her an angel? It's like going from one extreme to another ... society can have such a negative image of Down syndrome that we're going to go the complete opposite direction and call people with Down syndrome angels?

Calling all kids with Down syndrome angels feels to me like the stereotype of 'they're so happy and loving!' "They're angels sent from God" has the same ring to it. If I refute the 'so happy' stereotype and ask that Kayla not be lumped in as a stereotype based on her chromosomes, how could I then turn around and say, "oh but she's an angel!"? She's simply not. She is her own person with her own personality and her own character traits.

Saying that she is an angel sounds like elevating her status above a human being. It sounds like I'm putting her on a pedestal. It sounds like it's giving her carte blanche to do whatever she wants and excuse any behavior because, 'oh she's just an angel!'

I try so hard talk about the 'normalcy of difference' and show Kayla for who she is - a valued member of this family and of society - that I just can't make a blanket statement about her, and other persons with Down syndrome, being an angel on the basis of having an extra chromosome.

Then there is Lucas. I don't know how I would feel if I grew up with a sibling constantly being referred to as an angel from God. How would that make him feel? Why should I refer to her as more special than him? She does have some, for lack of another word, 'special' educational needs, and as she grows older there will be some 'special' arrangements we'll have to make for Kayla that we won't for Lucas. But, to quote a friend , she isn't 'special-special.' She is just who she is.

I also don't quite believe that she was 'blessed' with this extra chromosome either. It's just something that happened at conception, it's just something she has. Is it a blessing? I don't know. Down syndrome brings with it some frustrations and challenges for her (and me!) but is it really some kind of blessing?

I'm blessed to be her mom, but that's just because she's my daughter. I don't feel Down syndrome plays a part in that. I'm just as much blessed to be Lucas's mom.

Just because we're part of this big Down syndrome community doesn't mean we all have to agree on everything; it doesn't mean we can't have individual thoughts and opinions. Just because I feel like I do about this topic doesn't mean I'm right or someone is wrong for feeling like kids with Down syndrome are angels.

These are just my thoughts and it's ok to agree to disagree!

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