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.


Saturday, January 28, 2012

What happens when you blink your eyes

The transition between stages is swift, but sneakily creeps its way in without notice till one day you sit back and just say, "Wow, my kids grew up". I am still waiting for the age that doesn't trump the previous one. Baby smell and giggle are surely missed, but each new step of independence and intelligence makes each day better then the last.

Breiden, he is a smart one, that kid. He makes me forget that I am talking to a 3 and a half year old, what with his sarcastic demeanor and ever so persuading arguments. This kid can sweet talk anyone to get what he wants... except his uber sharp mom and dad. He has done this since he could talk, sweetly exclaiming, " Gavin! Look at that cool toy" and while his brother gets sidetracked with something new, B sweeps in and takes the toy that Gavin was playing with- the toy that he really thinks is cool. He is an actor through and through, most tears are forced for pure drama,  and it seems he is always in control and aware of how people react to different approaches. Breiden is outgoing (most of the time), a people pleasure, center of attention, cool kid- just like his daddy.

He is my protector- the big brother. (Although, he actually is the younger twin). He offers to help with Fiona and talks to her in the same tone and goofy smile that my husband and I do. He is quick to step in between anyone who he doesn't think should be near his sister and he is just as protective with his brother. Sometimes its hard to tell if he is being nice or manipulative with Gavin, though.

While I often try to tune out what is going on behind me as I drive the kids around in our mini van, eaves dropping on their conversations can be like savoring a sweet piece of candy. The crinkle of Fiona opening the velcro strap of her shoe was followed by Breiden saying, " Oh Fiona! Its okay, sweetie. I'll do it for you when we stop." Its food for your soul to hear your kids interacting like that. Its also reassuring to me that my kids are picking up on how I talk to them, and that its not screaming or anger coming out of their mouths. Its patience. At least, most of the time.

Gavin is hot or cold. Either super laid back or extremely emotional. I once thought he was a push over, but he definitely has spunk when he really wants something. Gavin is me. He is an introvert. He thinks before he speaks and has no problem keeping to himself. When he is upset, his whole body gets thrown into. Not in an acting, drama kind of way like Breiden, but in pure true emotion. His tears come from his heart. Gavin is considerate- Fiona is never without a toy when he is around. While he might not want to give up the toy he is playing with, he will go out of his way and find her something similar for her to play side by side with him.

He is random and dances to the beat of his own drum. " Go Alligators!", I hear him chant as I look over at him doing the Gator chomp. Left field, I cant even remember when the last Gator game was we watched, but he felt it fitting for whatever he was thinking in his head. He is shy and timid in new situations, but has more energy then you can prepare for once he warms up. Just like his mama.

Fiona. Man, does she have this household wrapped around her finger. Her cuteness is irresistible, and her presence is always wanted. I knew that we would be celebrating a lot of her accomplishments this year, and we have been hit left and right with new milestones. Baby girl drank from a juice box today. All by her self. Judge all you want, mommy war people, but getting a child with Down syndrome to learn how to drink from a straw or a sippy cup is far more complicated then them just being attached to a bottle. Its a physical skill that is very difficult for our low muscle tone kiddos. We are one step closer to ditching the bottle, on our way to walking and nearing a break through with speech. Its been an exciting kick off to the new year.


I feel the turn coming up soon. We are getting close to leaving the baby stage and having a toddler. Each day, those wobbly legs grow stronger and she is standing longer and longer. And she is starting to take steps forward with a little motivation and balance from my hands. I feel blessed to enjoy her baby-ness longer then usual and am ready to watch her becoming into a little girl. But there is something about her being my last baby. A heightened awareness and appreciation for the last 3 years I have gotten to enjoy with my babies being babies. With a new blessing that just arrived to one of my friends and another just starting to grow in another friends belly, I know I am far from being baby deprived. I'm headed for the craziest, best years and I cannot wait to see what they have in store for me. I am picturing lots of taxing my future NHL players to and from practice and lots of laughes on our living room floor.

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