Wrongful Deaths and Rightful Lives - screening for Down syndrome

As I was "rabbit chasing" down the internet infoway I came across an article entitled "Wrongful Deaths and Rightful Lives - screening for Down syndrome." It spurred me to finally start blogging. So here's a little of my story.

Prenatal screening for Down syndrome -- that was just getting started when I found out I was pregnant with my second child. I remember the doctor giving me the brochure. I remember reading the accuracy rates and how iffy they actually were and how if you really wanted to know you would have to do another test and actually, that test wasn't that accurate, and you would have to do another test....... until amnio was really the only way to know.......... and THAT test had a chance of harming the baby! I remember thinking how that didn't make any sense to me. So I didn't do it. And I'm glad I didn't. It didn't really matter to me whether the baby had Down syndrome and it still doesn't (and didn't with the next four pregnancies either) and I DO have a child with Down syndrome and I absolutely love her to pieces!

Is she perfect? No. Do I like what she does all the time? No. Does she always obey? No. Does she always get along with her siblings? No. Does she sometimes cause me trouble, inconvenience, heartache, grief? Yes. Are these questions true about my other 5 kids? A DEFINITE YES! (Sorry kids.)

Has she enriched my life? Yes. Have I learned new things because of her? Yes. Have I come to value each person in my life more? Yes. Have I met many wonderful people because of her? Yes. Yes. Yes. Yes!!! And is the same true for my other children? A DEFINITE YES! (See I love you guys, too!)

Having a child with Down syndrome is more like a "normal" experience than most people would think and for me a most enriching, intriguing, life enhancing journey that I am forever grateful for!

What I really want to do is launch out into a tirade against the medical profession and its push for prenatal screening that particularly singles out Down syndrome as something to be avoided at all costs; for its pressure on moms to do the "right thing" and find out so that a child with this "horrendous" disability won't be inflicted on themselves and the world (8 out of 10 babies diagnosed in utero with Down syndrome are aborted); for its lack of knowledge and interest on getting the real story on how a disability actually affects a family; for not talking enough about the dangers of intrusive testing (amnio and CVS) to a "normal baby".......... but, instead............


Please, please, please know that a diagnosis of Down syndrome is NOT the end of the world -- it's a new beginning, a new journey, a new awareness...........


If you know someone going through the pain of prenatal screening and its worries, questions, "what if's" and a possible diagnosis of Down syndrome............. reassure them, get information from parent support groups, talk to other parents................

Here is a link to the original article: http://www.down-syndrome.org/editorials/2087/

Here is a link to a very candid essay by a mom of a son with Down syndrome regarding her experience with prenatal testing: http://www.down-syndrome.org/essays/2013/

My Journey with Sarah

I have already shared a bit of my story but wanted to share some more. From when I was little I knew their was something different about Sarah but I loved her none the less. We shared so much together then, & I will always hold that bond & love we had for each other as little kids in my heart. For you see its not easy when you have a 4 year age difference between the 2 of us but we still played dollhouse & pretend so the age difference never came between us. People have commented to me via my involvement with Reeces Rainbow saying that I am so sweet & such, but really I would not be the person I am today had it not been for my sister who happens to have that extra gene! My sister has not been the easiest out of my 5 siblings to handle but somehow we keep making it through!

I fully did not understand the meaning of Down Syndrome & what it was til the 4th or 5th grade due to a book report we had to write. Through writing about that I got to share about Sarah in it. I still have it saved in a box somewhere.

A siblings perspective

Hello & welcome to our family blog! This is a blog my mom & I will share to blog about our life with Sarah, who just happens to be blessed with Down Syndrome. Life with her is not always easy but with Gods help we have made it & will continue to do so! I will start by writing about my perspective as a sibling to someone with special needs. I wrote some of this in our local down syndrome groups book but its been a few years so heres more.
Having Sarah as my sister has been the greatest blessing in my life, even if she has that extra special chromosome. It is not always easy being a sibling, somedays I even wish she was not the way or personality she is but that can never change my love for her. The biggest struggle that we seem to face with her is that she has social phobia which is not the normal for people with Down Syndrome as most are pretty outgoing & loveable. Through the years I have gone to a camp for kids/adults with special needs & their siblings. The way its setup the siblings have sorta a seperate program to hangout with other sibs that they can relate to & discuss life with a special needs sibling. To me this has been my greatest support, as its been the only place I have gotten to fully discuss what I feel & meeting others that are going through the same thing. I grewup with no friends in the same town to share that same bond of a sibling with special needs & I am so glad Camp Barnabas provided me with that friendship and support to know I am not alone in the world.
I think thats all I will write for now!