Wednesday, October 3, 2012


Sometimes I want to write here- to rant all about the injustices, the ridiculousness, the hypocrisy and the downfall of our society because so many people refuse to accept less than perfect, and in doing so, in chasing that dream of perfection, have a much less "perfect" life.  While I would classify myself as pro-choice - to be honest, after 2 rough (physically) pregnancies, I would have a hard time forcing someone else to go through with a pregnancy that they decide they cannot handle, although personally I do not support abortion, would never consider it for myself, but really I wouldn't put my personal beliefs on someone else - but I hate the fact that due to a tiny glimpse into a tiny inaccurate biased portion of what Down syndrome is, so many people are trying to avoid it, kill it, and just generally be against it.

Because "it" is my daughter, and she's pretty close to perfect (or as close as any child I've ever seen).  And it could be your daughter, your son, your grandchild or niece or neighbor or student or friend.

Sometimes I believe God chose Jon and I - because we are so loving and unbiased and we are so grateful that God gave us this special gift of a daughter.  But sometimes I think - while He made Lilly so perfectly the way that he makes all children, perhaps it is just a fluke that He sent her to us instead of another family.  And either way, I do believe that He made her - that her chromosomes are not an accident and that she is very intentionally exactly the way she is (and it is hard to believe otherwise, when you see her intense positive impact on the world) - and as such, it is not just us "dealing" with this child within our own family - but that she was given to us but moreso to the world.  It is our responsibility to take care of her.  I'm not talking about money, or resources necessarily, but taking care of her, as a valued member of our society.  Like when you see my daughter, to not judge her but instead to see that she's just a 6 year old girl who is in love with Barbies, Justin Bieber, dance parties, and traveling.  That she might have a lot in common with your own child, or that she has a lot to teach you about life, and living life to its fullest.

My child has Down syndrome, but even more than that, she has courage, she has strength, she has wisdom, she has beauty, and she has the biggest heart.  She has faith that the world will be good to her, and generally, it is.  On a personal level, it almost always is.  But that's what kills me, is that there is this huge movement - among doctors, and genetic testing, and pregnant moms, sometimes the education system, and even in the media generally, that my child is part of a class of citizens that is not enough.  And trust me, she is.

7 years ago, when we got that first genetic test with the 1 in 10 chance of my unborn baby having Down syndrome (which a week later turned to 1 in 5), we quickly wondered if we were unlucky.  But every day of Lilly's beautiful life I feel the biggest hugest amount of lucky that a person could feel.  Like I won the lottery, with this girl.  How can we change the way that moms like me originally feel, based on - basically - nothing?  Why did I feel sad, when the reality is actually the happiest our family could possibly be?  I can't even imagine things turning out differently, and thank God they didn't.  So why is there this disconnect between a hypothetical "Down syndrome" and having an actual child with Down syndrome?

To anyone that is in our shoes, or to anyone who wonders what it is like for us, the honest truth is, having Lilly was the best thing that ever happened to us.  She is a ray of sunshine, she is smart, she has an admirable sense of self and a strong work ethic and the courage to face anything.  She is everything I've ever wanted in a daughter and more.  So as much as I've said things like this over and over again on this blog, I think it bears repeating, because not a day goes by that I don't think of how amazing my little girl is.

1 comment:

Becca said...

Beautifully, beautifully said.