Saturday, October 29, 2011
Q & A
Have you ever wondered what its like being a sibling to someone with special needs? If you want to ask me a Question about having a sibling with Down Syndrome or any other questions for me ask away in the comments.
Friday, September 30, 2011
The positives
Acording to the Recent test in October edition of the American Journal of Medical Genetics:
among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.
I can say, I fully agree with that one! I do believe Sarah has made me who I am because of that extra chromosome. She just feels like a normal part of our family! But if someone thinks the child will be a burden to the siblings just look at this. If my Mom had thought that about Sarah, all of us in our family would not be who we are today.
among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.
I can say, I fully agree with that one! I do believe Sarah has made me who I am because of that extra chromosome. She just feels like a normal part of our family! But if someone thinks the child will be a burden to the siblings just look at this. If my Mom had thought that about Sarah, all of us in our family would not be who we are today.
Sunday, August 28, 2011
My Sister
For most of you, you know my sister personally but those that don't know heres a introduction & a little more.
Sarah is almost 24 years old, loves to dance, sing, & act.
She LOVES playing scrabble & beat everyone at disney trivia. Unlike most people with Down Syndrome she has been healthy with no typical problems that usually come along with that diagnosis. Down Syndrome has not been too much of a problem as her Social Phobia which is also unusal since most people with Down Syndrome are pretty outgoing.
Its kinda interesting how life turns out, when we were little before our younger sister stephanie came along Sarah & I were best buds always playing together even with our 4 yr age difference. Now Stephanie & Sarah are best of buds always creating new dance routines. I really don't mind, I think its awesome that they love to do stuff together.
If she had been born in a different country, she would probably be sitting in a institution somewhere doing nothing. My sister is smart & its my goal in life to let people know even in this judgemental world of ours, that ALL LIFE IS PRECIOUS, & it really is not the end of the world that you have a child with special needs. So they might learn a little bit slower, do things a bit different, but they are children of God & are every bit MORE ALIKE THAN DIFFERENT! God created us all, & not all of us are perfect.
Sarah is almost 24 years old, loves to dance, sing, & act.
She LOVES playing scrabble & beat everyone at disney trivia. Unlike most people with Down Syndrome she has been healthy with no typical problems that usually come along with that diagnosis. Down Syndrome has not been too much of a problem as her Social Phobia which is also unusal since most people with Down Syndrome are pretty outgoing.
Its kinda interesting how life turns out, when we were little before our younger sister stephanie came along Sarah & I were best buds always playing together even with our 4 yr age difference. Now Stephanie & Sarah are best of buds always creating new dance routines. I really don't mind, I think its awesome that they love to do stuff together.
If she had been born in a different country, she would probably be sitting in a institution somewhere doing nothing. My sister is smart & its my goal in life to let people know even in this judgemental world of ours, that ALL LIFE IS PRECIOUS, & it really is not the end of the world that you have a child with special needs. So they might learn a little bit slower, do things a bit different, but they are children of God & are every bit MORE ALIKE THAN DIFFERENT! God created us all, & not all of us are perfect.
Monday, August 8, 2011
A good start
Hey Everyone, I thought I would write a brief glimpse of what I have started to write for my book to see what you thought.
From the moment my sister was born God knew the plans he had for her. For you see unlike most children God gave her an extra gift of the 21st chromosome or otherwise known as Down Syndrome. All children were made in his image, & I believe he has a purpose for those even born with that extra chromosome or other special needs. Just because your child will be born with or has Down Syndrome, does not matter as they are about as normal as you & I will ever be. Did you know there are full waiting lists in the USA dying to adopt a child with Down Syndrome?
Thats not all that I have but I don't want to give away all what I have written quite yet since, I hope to turn it into a book. For you see, My mom & I have had a thought of traveling the USA hoping to share our stories with others & for Sarah to dance. So naturally after I came home from church yesterday, I had thought about this verse that they talked about in Soul Surfer:
Jeremiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
So I went home & started typing away. I ended up with almost a page worth which I still need to refigure & work with how to put it but my mom thinks its good thus far. I still need to do more research to put things in my perspective in the book I hope to make but I know God can help me along this new journey in my life & hopefully for Sarah too.
From the moment my sister was born God knew the plans he had for her. For you see unlike most children God gave her an extra gift of the 21st chromosome or otherwise known as Down Syndrome. All children were made in his image, & I believe he has a purpose for those even born with that extra chromosome or other special needs. Just because your child will be born with or has Down Syndrome, does not matter as they are about as normal as you & I will ever be. Did you know there are full waiting lists in the USA dying to adopt a child with Down Syndrome?
Thats not all that I have but I don't want to give away all what I have written quite yet since, I hope to turn it into a book. For you see, My mom & I have had a thought of traveling the USA hoping to share our stories with others & for Sarah to dance. So naturally after I came home from church yesterday, I had thought about this verse that they talked about in Soul Surfer:
Jeremiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
So I went home & started typing away. I ended up with almost a page worth which I still need to refigure & work with how to put it but my mom thinks its good thus far. I still need to do more research to put things in my perspective in the book I hope to make but I know God can help me along this new journey in my life & hopefully for Sarah too.
Monday, July 18, 2011
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/
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/
Sunday, July 17, 2011
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.
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.
Sunday, July 10, 2011
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!
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!
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