Monday, September 27, 2010

No Burden of Mine

A recent online article on the New York Times website made my heart race with utter joy!


In short, the article was about a mother with a daughter with Down syndrome, and how she refused an amnio with her following (current) pregnancy because it wouldn’t matter to her if this other child of hers had Ds. She loves her daughter and never sees herself regretting her daughter.


THEN I read the comments. It was a kick in the gut. And not just any kick in the gut, there was a steel-toe boot on that foot! This woman’s story set other readers off! There was this “what a horrible mother for purposely bringing a child with a disability into this world and possibly bringing another one” tone in these comments. They bashed her for loving her daughter unconditionally and challenged her to write the same story with the same happy beat 20 years from now. As if she was to realize that her daughter was a burden, somewhere along the way. These readers without a child with a disability, how could they possibly make such assumptions. They based their beliefs and thoughts from outdated stories they had heard, people they used to know, and overall lack of knowledge.

There was a reader who stated her mom had CP, and her own life very difficult because of her mother’s life and diagnosis. Even though she realized that she was on this earth because of her mother, she would have wished that her grandmother had aborted her, had her grandmother had that option. But was it truly her mom’s condition that made it that hard, or her mom’s poor decisions in life (apparently, the mother had made some not so wise decisions along the way).

There was another mother with a child with multi impairments, and she said had she known then what she knew now, she would have aborted as well. That even though they centered their life around her and she brings them much joy, they are not sure this life brings her joy.

It was very hard for me, as a mother of a child with down syndrome, to swallow some of these comments.

If there is one thing I believe is this, Ethan brings us joy, and we will make sure to bring joy to Ethan, just the same way we will bring joy to our sweet girls.

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I married my husband, and I am here to bring him joy. I gave birth to two daughters and I will bring them joy. I gave birth to Ethan, and I will forever bring him joy as long as my GIANT heart beats. As a mother isn’t that one of our responsibilities? We don’t just spit a kid out, and TADA, here is 20 bucks, go raise yourself, see you later, nice knowing you. Well geez, had I know it was that easy, I would have had 20 kids or so.

This past Saturday, was our monthly meeting at our local DSAH. We had a great guest speaker who was there to talk about advocating within the government. She is a mother of a child with multi impairments, but do you think she has sat around and boohoohoo’d , HECK NO! She was amazing! She radiated this empowering energy! She said something that I have always felt, and I am glad she said it. (I think she was reading my mind, as amazing as she was, she might have had super powers) She said this “When I meet my Maker, I want to tell him that I did everything I could for this child.” That statement was dead on for me. I have bent over backwards for this child, I have jumped all sorts of hurdles, I had to face prejudice directly in front of me. I’ve had to take deep breaths and go way out of my comfort zone to educate others. I have NAGGED others to death to make a point. And my son is only ONE. So you best believe I am not done! And I will continue, for as long as God allows my physical body to function, I will fight for my son and for others like him. When I meet my Maker, I will proudly say, GOD, this child of yours that you so dearly trusted me with, I DID everything in my power for him to live to his fullest potential and have a joyful life.

THAT IS RIGHT!
I feel so good just saying it!!!!
GOD is good I tell you. I will praise HIM, through the bad and the good.
And through the good and the bad, I will love all my children.


The real burdens in life and in this society are those people running their dirty mouths about nothing they have no firsthand knowledge about. Twenty years from now, I will continue to talk about all the joy Ethan brings me and maybe one day he’ll be able to chime in with his own personal stories of his very joyful life.
Oh, son of my mine, you are so far from ever being a burden and those of us that love you will never see you as such.

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