Friday, October 28, 2011

pondering...


Why is it devastating to have a child born with Down syndrome? I am not sure…today as I was watching Maddie play…this thought came into my head…and I threw around different things…like -she is not like everyone else…and then I thought who cares…because she looks a “bit” different…and then I thought not really…she is cuter and more interesting…but certainly not different…so why was I so devastated about getting the “diagnosis”…I think it was purely selfish fear of the unknown…now I question why I was depressed…why was I so sad and so judgmental…this was purely a refection of self hatred…that only I could remedy…why be devastated of a child? A child I helped conceive…a child I planned for and longed for…again purely a selfish indulgence…if having a child is only for the “perfect” accessory on my hip…I probably should not have children…they grow up, they speak…and they will disappoint my delusional view of parenthood…parenthood was hard with a “normal” child…I am always at a loss of how to teach, model and discipline…most people with or without children seem to have unrealistic opinion and remedy that does not work for us…so back to why be devastated about Maddie…I cannot answer this question clearly…and I am not sure if want to…to know how it feels to get a “diagnosis” it is a uniquely mine experience…hard to explain even harder to hear…I am over the poor me and poor others that may have a child they did not expect…Maddie is the pride and joy of my life…and I could not be more proud of how she points her finger, says hi, eats food, hugs her brother, rides a hot wheel, and dances to every song…so in the closing of Down syndrome awareness month…awareness happens in this house 365 days a year 24 hours a day…we live and breath it…and are very proud to be a member of these designer genes!

8 comments:

  1. This could be my all time favorite post!!!! If I could do anything it would be to relive Sutter's first year of life...I would do so many things differently and I would have cried a lot less!

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  2. I think the devastation is a result of the unknown. Now that I'm much more knowledgeable about my daughter's diagnosis and her endless possibilities, I'm no longer devastated.

    We acknowledge that she has Ds, but she is not Ds. She's just a sassy 2 year old who brings us pure joy every day!

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  3. So perfectly worded...and could not agree more with you.

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  4. I couldn't answer your question. I know the devastation I felt at being told that my unique, quirky and funny son had a learning disability. And yet he compensated and is fine now. No, he isn't the brain surgeon or comedian I had dreamed of. But he is a loving and committed father and paramedic and a person that I can be proud to have raised. But now I can't tell you why I felt the shame and disappointment that I originally felt. I know we didn't face all the challenges that you and your daughter faced, but I think the result may be the same. We build on what we have.

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  5. Man I love where you come from and where you are at now , so GOOD,

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  6. Loved this post Kim! I have had a lot of similar thoughts running through my head lately.

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  7. I've been having lots of conversations lately about how NOT worried I am about Down syndrome right now (mostly with regards to baby#2). And looking back I wonder, like you do, what is really so bad?? I think it has to be fear of the unknown. Now I know, and have

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