Thursday, 13 August 2009
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.