Tuesday, January 31, 2012

What the world would miss....

There are two sides to every story. Two view points. Take the same scene from different vantage points, and you can end up with two very different accounts. Each person feels justified in their conclusion, their angle. No one argues something they don't truly believe in, or at least, most people don't. Arguing takes a lot of energy to waste on something that you don't stand firm in.

I try to take this inconsideration when I am confronted with very different views then my own. There is one reaccuring issue that is always on the for-front of my mind, and that is that 9 out of 10 Americans abort with a Down syndrome diagnosis. The sickening emotion that boils up in me with this concept is more then I can handle sometimes. To me, it is nothing but pure selfishness.

But, yet, some argue that the opposite is true. Some view keeping a child with Down syndrome is motivated by nothing other then selfishness. This accusation torments me.

Their reasoning boils down to the concept that people with Down syndrome are a burden. And before you jump down my throat about the ignorance in that, humor with me in the truth of it. I tend to tunnel vision on individuals and not look at the big picture because I am blessed/cursed with apathy. But in the big picture, people with special needs will cost the government more to take care of, they will cost their families more to care for. They require more attention, more care and will come across more hurdles in life then someone who is born with 46 chromosomes and lives a healthy, accident-free life. To them, me keeping a baby who will cost us more (emotionally, financially) and "struggle" in this life, is selfish on my part because I cannot give up my baby for the greater good of people, for the greater good of my baby. (Stay with me if anger is welling up inside you...). I often read mothers words, trying to defend their child's right to be on this earth, but really their arguments are only fueling the other sides fire (I am sure I am guilty of this as well). One sweet mom just did a youtube video, talking for her 2 year old daughter through note cards, explaining what her two year old wants in life. And while I so get what she was trying to do, I couldn't help but see the other side laughing at her attempt to change minds by telling them that her 2 year old wants to go to college. Her 2 year old knows nothing about college, the mom wants her to go to college. Yes, yes someday, Fiona will grow up and have normal ambitions of her own, but to try to show people that she is normal by showing what we dream for her to dream is not a very strong argument.

I often get discouraged because I don't see many parents of older children with Down syndrome advocating. And I don't think that I am the only one who sees this, as others search the internet for positive info about life with Down syndrome. Most of the enthusasum comes from those with kids 5 and under. I don't know if this is because we younger moms are more internet savvy, or if we have more time to advocate. But a bigger hunch tells me life gets a lot more sticky when our special needs kids get older. The different becomes more defined and showing the world how our kids are "more alike then different" gets a little harder. I've read the cruel words, " What happens when she is not a cute baby any more and you have to face the reality that she is retarded" directed at someone else but equally stabbed my own heart.Watching A Smile as Big as the Moon the other night, it does sting to see older kids with Down syndrome. The reality that Fiona's life is not going to be normal sinks in deeper. Its hard to describe what goes on in my head. A mixture of bitter sweet as my heart melts with how amazing these people are, but sinks with how much harder life is for them.

I can see how I can be perceived as selfish. I put my love for my daughter before, well, pretty much anything. Because I love her, I think she is worth every extra penny our taxes go to helping her develop and thrive. Because I love her, I think she deserves the same opportunities every other person gets- the same rights- the rights to life, liberty and happiness. Those who view specially challenged people as a burden don't see the positive impact they can also be. Difference is one of the most vital characteristics to the human race that allows us to function. For every challenge, fight and hardship it brings, it also encourages compassion, selflessness and intelligence that makes us together stronger. But for some, actually, statistics tells us for most, this isn't enough. The fear of different or the view that they are being selfless by sacrificing their baby so that no one has to deal with the burden 9 out of 10 times wins.

I can't tell you if my daughter will be smart enough to finish school or attend college. I can't tell you if she will be able to function enough to work or support herself, or that she will have the desire or motivation to do any of those things. I have no argument for you that my daughter does recieve help from the government, that your tax dollars go towards her therapy and hopefully, her medical expenses, one day as well. Life will be harder for her, people will make fun of her and belittle her. Life is harder and more hectic and scary for us. She probably will get hurt and make bad decisions because she is niave and suptible to being taking advantage of.

But I can tell you she laughs. Happiness, it beams from her eyes. It streams from her lips. I can tell you that I have never been happier or more alive in my life. I can tell you that I have become a better person because of her. I can tell you her father has become a better person because of her. I can tell you that people we barely know have been touched by our 17 month old daughter with Down syndrome and she has changed their lives for the better. I can tell you that although there is fear and pain on this harder road, especially in those first days-year after the diagnosis, there is no regret. No two people are the same, but many many people with Down syndrome live long, fulfilling and meaningful lives, just as in the same regards many people without Down syndrome do not. And while I cannot speak for Fiona, out of 3,150 people with Down syndrome surveyed, 99% loved their lives and who they were. 9 out of 10 parents terminate their baby with Down syndrome claiming it is for the best, but yet 9.99 out 10 people living with Down syndrome love their lives. Those are facts.

Would our world be a better place without special needs? That question is so controversial. From the scientific stand point, and the protective heart of a mother, of course we would want to make our kids lives easier if we could. To save them from the surgeries, the sickness, the ridicule and the hard work that comes along with disorders. But would the world benefit from perfection, a genocide of the imperfect? And then there is the greater question of when do we stop? When are we good enough to be accepted? If I could have Fiona, but remove her extra chromosome, would I? Would she want that? Fiona isn't Down syndrome, but Fiona isn't who she is without Down syndrome. She literally would be a completely different person. This is a lot different then, per say, wanting to cure someone from cancer. Down syndrome isn't a disease, its part of who the person is. She most certainly isn't suffering- there is nothing to save her from, only obstacles to help her through. I really don't think I would want Fiona to be any other way- I really, truly see her as perfect, even with all of her imperfections. The world wouldn't be a better place without people with special needs. That is my opinion.



  1. I LOVE this post. For a while after Kamdyn was born, I had a very time with the thought of her future. I have come to a place where I feel like I can accept however it turns out, even if it isn't exactly what I would have wanted, because I believe with all of my heart that Kamdyn's dreams will come true, whatever they may be.

  2. I love these words too. I had a similiar thought when I saw the video of the mom and the index cards. It's like, we can speak to 2 types of people during our journey. Those who get it b/c they love someone w Ds. And those who don't. The real social challenge is to show those who don't love/know someone w Ds that it is ok to have Ds. The best and maybe only way to do that is for our children or adults w Ds to get out there in the world and do stuff!! They need to be included in life so that others will SEE that they are more alike than different. The mom w the index cards did an amazing job....but she was talking to the wrong group. WE GET IT.....it's those who don't that we have to reach....and that video didn't offer "other people" anything to get to know our kiddos. That's why I love your blog and others like it...showing our kids as kids. Love your words...keep up the social awareness and hopefully the rest will eventually fall into place and it won't be 9 out of 10 aborted if families are used to this as a part of the norm. Thanks for sharing! xo

  3. Written so well.

    What people forget too is that many "typical" kids grow up and can become a burden on society, if that is what we are calling it, as well? There are no guarantees in life at all. So, that means my daughter should have the right to live a meaningful life too, even though at birth she was handed a different card. Everyone gets their own cards along the way, and I think those who are quick to judge may need to think about that one.

  4. Loved this post Shannon, there is just so much truth in it and it was beautifully written.

    I do not know what the future holds for my son either. I cannot tell people what he will or will not be capable of. So when I advocate for him it is for the opportunities that my other children will have to be open to him as well if he can do it. I am not saying he will be capable of going to college, but if he is I want him to have that right.

    I have to say I have also noticed the Moms who advocate and blog and Fb stuff about Ds are often Moms of very young children with Ds...I have wondered myself why that is. I suppose there could be many reasons. It's just interesting to notice that.

    And I agree with you...The world would NOT be a better place without Special Needs! It is truly heartbreaking how many children do not get the opportunity to be born simply because they are not perfect or deemed worthy of life.

  5. this is a members only club..a mom of a special needs child...and I do think then when you bring a baby home it is automatically loved by all...and with special needs moms we see the future..we have read everything...so the fear comes with knowledge...money and fear is why we abort...fear is also why we do not abort...so I agree an outsider judges on there preconceived ignorance of $, stress, time...and insider judges others to see if they are doing ok...I judge! not because I want to..I do because I am human...I think being a mom is a personal decision regardless of the child you create...smiles

  6. I know a mom with a 50 yr old son. While she doesn't always speak as vehemently as those with younger kids, she does speak. And I think it is important to keep in mind that ESPECIALLY those with children in their 30's, 40's and up had to fight HARD to enable their children (and ours as well) a life which could be whatever they chose to make of it. They had to fight to keep their children from being shoved into institutions. They fought for inclusion in schools. They fought and fought and fought. Every single thing we other parents have now is because some parent fought like Hell to get it for their own kid.
    That being said, I think there probably comes a time when each of those parents has had enough fighting. They hand over the reins to us, the younger generation, to pick up the battles where they left off. It becomes our responsibility.
    I, for one, am immensely grateful those battles have already been fought because how awful would it be to not only be fighting prejudice against our kids, but to be fighting for a chance to keep them with us? To get them therapies? To have them go to school? How many of our kids would even be here to tell the tale had they been born 50 years ago when no one had the capabilities OR the motivation to heal our babies' broken hearts? Not very many is my guess.
    We do judge, no matter how hard we try not to. We judge because we know that despite the extra money, the extra time, the extra effort, our kids are worth it all. And it makes us furious (and in my case, overwhelmingly sad...) that others refuse to see the beauty that is within each and every one.


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