Saturday, October 15, 2011

Day 15: Curve balls, facts and common courtesy

Life has a way of throwing you curve balls. And I have learned to expect curve balls. They are inevitable but I am not psychic so I don't know when they are coming. But I know they will be pitched my way eventually. How do I handle the unexpected? I don't. I try not to expect. This is easier for me to type then it is to actually implement. I talk a big game. I have never been a "one day at a time" type girl. Being pregnant changed that. I needed to take my pregnancy one day at a time. I was terrified about a miscarriage. I then worried when I was told that babies with Ds have a higher chance of being stillborn. I then worried when at 36 weeks and 5 days the doctor told me Harper had stopped growing appropriately and she needed to come out. Actually having Harper changed that even more. But one thing I do know for sure is when a curve ball is pitched my way I try to hit it as hard as I can. I do this by understanding everything about that curve ball.  

I admit that before Harper's diagnosis I was naive and uninformed about Down syndrome. I have put together a short list of facts and common courtesy tips that I found to be helpful. Take them or leave them and please keep in mind that this list is not exclusive. I guarantee that there are millions more that I could have posted. 

 At the risk of pointing out the obvious (and insulting your intelligence) number 5 is bolded for a reason. I want everyone to understand that Down syndrome is not to be blamed on anyone. I did not have a drink while I was pregnant. I did not take the wrong medication. It just happens. I have encountered this conversation numerous times and is an entire blog post itself. But for the time being, just know that number 5 is near and dear to my heart. 

1.  Down syndrome occurs when there is an extra copy of chromosome 21. This form of Down syndrome is called Trisomy 21. 

2. Down syndrome occurs one in every 800 live births.

3. Although the chance of Down syndrome increases with the mothers age, 80% of children with Ds are born to women 35 and younger.

4.  It's called Down Syndrome. Not Down's syndrome or Down's. In 1975, the United States National Institutes of Health convened a conference where they recommended eliminating the possessive form: “The possessive use of an eponym should be discontinued, since the author neither had nor owned the disorder.” John Langdon Down first described it in 1866, but he neither had it, nor "owned" the syndrome so it should not take on the possessive form of Down's syndrome. 

5. Down syndrome happens before conception; so there is nothing a person did, or didn't do, to cause it. It happens when the egg, or sperm, is produced with an extra copy of chromosome 21.

6. While divorce can happen in any family, the studies are actually showing it is currently lower in the families who have a member who happens to have Trisomy 21.

7. Please use People First Language. Many people say a "Down's child" or "Down syndrome child." I've never heard anyone say a "Breast Cancer woman." Please put the person before the disability.

8. Don't even get me started on the "R" word.

9. Label jars not people.

10. People with Ds are living longer than ever before. They can live independent and productive lives well into adulthood.


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