Thursday, 13 August 2009
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Down syndrome and Myths
by Mama Pig
I have been very blessed to have met many people that do not view Emily as "that kid with Down syndrome". I like to think it is because that is not how we choose to define her. In our world she is simply, Emily. Yes, Down syndrome is a part of who she is just as much as the color of her eyes is a part of her.
I have read the statistics and I know that 9 out of 10 people would not have made the choice to have Emily had they been aware of her diagnosis. It makes me a bit sad, but I totally understand that this life isn't for everyone. I will never look at someone that chooses to terminate and tell them "you are wrong". I would most likely offer you the most up to date information in a quest to make sure you have all the knowledge necessary before making such a decision, but I would stand behind whatever decision you made.
I have often said that in my wildest dreams I never imagined myself as the mother of a child with a disability. I have also often said that now I can't imagine my life without her. The first year of her life was probably one of the most difficult years our family has ever endured. A month in the NICU following her birth, monthly visits to see her cardiologists, heart medications, a hospitalization for a rare infection, and finally an open heart surgery. Not exactly a trip to Disneyland, but a year in my life I wouldn't trade for anything.
The way I look at it is this; before having Emily I would have of course said that I would want nothing more than to have a healthy child with no disability. Having actually held this sweet angel in my arms for these last two years I can't imagine her any other way. She is the light of our world and I am so blessed to have her.
I understand the fear that some have. Trust me, I have the same fears. What if she is never able to live on her own? What if her heart gives her trouble in the future? What if someone laughs at her in school? However, the same questions could be asked for each of my children. I went to school with a young man that had a promising future in football. One evening he was involved in a near fatal car accident. In one short moment his world changed forever. He suffered a severe head injury that hindered his speech and his thought process. He also was never able to participate in sports again. My step father was 62 when he died suddenly from a blood clot that traveled from his leg to his lungs, causing him to suffocate. He had never had a serious medical problem prior to his death. Whitney came home a few years ago from school crying because a few of her friends decided to be less than nice to her.
The fact of the matter is, none of us really know what our future holds. I hear all the questions; "what will happen to her when you die?" "What about your future after the other children are grown and gone?" "How will you travel in your retirement years?" My answers are always the same; I don't know what will happen to Emily upon our death. I don't know what would happen to any of my children upon our deaths. I know that there is family in place set to take them on if something tragic happened while they are young. I know that between her seven brothers and sisters IF she were to need a home as an adult and we were not here to provide her with one, they would all be more than willing to take on that responsibility. Notice I said responsibility and not burden? Emily is not a burden to any of us. I know some people say that my other children didn't sign on for the care of their disabled sibling, my children would tell you something very different.
When the other children are grown and gone Matt and I plan on having a beautiful condo at the beach. If necessary, there will be a room for Emily. I believe with all my heart that it won't be necessary. Emily is being raised to be an independent individual. I always plan on her doing whatever she puts her mind to. I worry more about a few of the other kids and their futures than I do about Em's. Matt and I will travel the world when we are older. If Emily is by our side, so much the better. Who wouldn't want to show their child the world?
Emily has Down syndrome. She doesn't have some horrific disease. She is not a manipulative sociopath and she doesn't project evil out onto society. She is a beautiful little girl and I am proud to be called her mommy. For those idiots of the world that can't or won't see her for the wonderful human being that she is, I only have this to say; you are missing out on something great.
(This was in response to the vile hatred that was put up in response to a comment on Momlogic.) I thank each of you for embracing my little girl for the child that she is not the disability she was born with. You guys are the best.
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About the Author
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- From: mamapig
- Name: mamapig
- About Me: Hello everyone. I am Mama Pig. I am a very busy mom of eight children. Five by birth and three my marriage. While it is a busy life, it is one I wouldn't change for the world. Our oldest is 18 and will be graduating in May. We are even in the boys/girls department with four each. Two just turned 14, two just turned 12, one will be 10 this year, and the babies are 4 and 2. There are no twins in the mix, just step siblings that happen to be close in age. You will read alot about Down syndrome when you read my blog. Our youngest daughter was born with Down syndrome as well as a congenital heart defect. These are two issues I am extremely passionate about. I just resumed classes at the local community college. My goal is to someday reach law school with the hopes of focusing on family law.
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Comments (17)
From my experience of working with children, every child I've met who had down's syndrome was always exceptionally kind and loving towards everyone around them, it was lovely to see and be apart of!
I like this post alot
This is wonderful. =)
@silvermoon_lauwa@xanga - @Fairywife@xanga - Thank you both.
I use to nanny for a family who's daughter had down syndrome. (Her name was Emily too!) She was the highlight of my day. She was three and even though it was challenging at times, what child isn't? She was such a cuddle bug. I miss spending time with her!!!
When I was pregnant we decided not to do the test that looks this. It didn't make a difference to us, we were going to love our child no matter what!
This is beautifully written, thank you for sharing!!
love it!
my friend's sister has down syndrome, and she's the happiest girl i know. Everyone at our school loved her, and (mostly) everyone was nice to her.
I'm sure your daughter will make you smile everyday. I think that makes all of the struggles worth it.
@KENDRA__D@xanga - I am so glad you found this worthy of sharing. My daughter is as normal as any other child and I love her beyond belief. I am sure your friend feels the same about her child. Thank you for your comment.
@KimisBarbie@xanga - She indeed makes me smile every day.
To what i know down syndrome kids are the most loveliest caring happy children with not one nasty mean or bad bone in their body .. what is so bad about that?? God never gives us more than what we can handle, he obviously saw you have a huge heart and needed someone like your daughter in your life :)
God Bless
Oh and that picture that you have on ur post of the baby .. well isnt that one of the cutest little babies ive ever seen .. so beautiful :)
thanks mama pig for always sharing your knowledge and experiences of down syndrome with all of us. it's also great to see the comments that others leave with their own experiences as well.
I have always wanted to know parents with disabled children.
Me myself, would not know what to do if this situation raised.
@Swt_Watermel0n@xanga - I honestly had no clue what to do, it just kind of came naturally as we went along. Above all, she was our beautiful little girl and the rest just kind of fell into place. I imagine you would be just fine.
growing up, i have always known OF them because my mother would talk about her workdays before she had children. my mother worked with down syndrome children in the 60's and 70's. Those were tough time, i can imagine. nowadays we are more aware and knowledgable about them.
then my daughter was born. my doctor was worried when she came to me saying there's a possiblity that she was a down syndrome. my first respond was, "okay and so?" she looked at me surprised, still explaining why she thought my daughter was one. I told her that it didn't matter as long as i was able to hold her and take her home with me. we could figure out what to do if she is one.
[of course later, it was discovered she is not. though it is possible we have had someone in the past family with one because of my mother's. she was adopted, so we have no knowledge of who her family was]
but as i was saying, what does it matter what kind of children we end up with? all it mattered is we loved them, rather they are step children, in laws, adopted, friends, and so on. the list are way too long.
it is possible to be a mother to anyone. love is what it takes to make us one.
This post was so heartwarming. I'm a case manager for an agency that provides independent living services to adults with MR/DD diagnoses, and I have a few clients with Downs. One in particular is a woman who is 62 years old and one of the funnest and most loving people I've ever, ever met - she is such a blast to spend time with! I wish the world had your kind of understanding of not only just how normal but how special these people and children are.
@Vallery@xanga - Thank you so much. I am so happy to have received such positive comments.
This post is great. :]
My cousin's child has Down Syndrome, and sometimes when we are in public people will go out of their way to avoid contact with us. If her son wanders over to another child, sometimes the mother of that child will pull them away. As if he had some disease that could infect another person.
I will never understand how a person could treat her child differently from any other child.
A baby is a baby is a baby. All babies deserve to be held, kissed, swaddled, and loved. All babies deserve a chance at a normal life.
@raved@xanga - We actually had this happen to us at our pediatricians office a few weeks ago. It was the first time I had ever seen a mother shield her child from Emily. My hope at the time and even now is that she was concerned that Emily was at the doctor due to illness and simply didn't want her child to get ill. If I am wrong then I would rather be wrong then face the truth of the situation.
Thanks so much for your comments. It has been wonderful to see the support from everyone. It gives me hope that someday everyone will feel this way.