Tuesday, March 18, 2014


most of you who read this blog probably know, or have figured out that i'm a Christian.  with that being said, there are still things that some Christians practice that are far beyond my comprehension, and that leave my heart breaking.  some of them I have experienced myself, others I just know of.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs.  i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little.  and big's disabilities are far less obvious.  however, I wanted to share a story.  I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.

a few weeks ago I was at church.  shilo had been in her gait trainer during music dancing a little, and I had just taken her out.  when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo.  I had never talked to this man before, but knew a little bit of who he was.  I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all.  the whole thing lasted only a few moments, and I don't even remember what he specifically prayed.  I do know that it wasn't for her to be healed.  and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking.  I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.

I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard.  but, there are also hard things about the disorders that are obvious.  many people tell me they are so sorry when they see that shilo has Ds.  they see her as broken.  as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next.  I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too.  but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level.  her almond shaped eyes give her away.
my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken.  the anger I struggle with.  the fact that I often don't sleep well.  my anxiety.  oh my word the anxiety.    there are so many things about me that aren't up to par with most of the rest of the world.  but, when people see me, they think of me as average.
my goal in raising shilo is not to make her blend in.  my goal, is for the world to see her as whole.  complete.  no more broken than any of the rest of us.  most days, my experience is that she's less broken.  she is content.  she is joyful.  she works hard.  she is determined.  she is not easily swayed by others reactions.  she is forgiving.  she loves big.

1 comment:

  1. Oh Andrea. While I may not be as vocal about faith as you, we are in many ways two peas in a pod (although I think your side of the pod is in a lot of ways more amazing and more beautiful than my own...:)) Our journeys are different, our girls with the little extra have different challenges ahead of them and have overcome different challenges already. What you see as your own brokenness, I see as part of the beauty that is you, inside and out. What you see as a weakness (say, compulsive worrying) I'd dare to say is part of your strength as a parent....as someone being privilege to your story, I have seen with my own eyes that while that worry might not have totally avoided the bad stuff, it has diverted the worst case scenarios we have seen happen in our global Ds family (and that's from one worrier to another).
    Whether the world chooses to see our children as broken or chooses to see them as the beautiful, amazing creations they are, are pure perfection. Not broken, despite their challenges. We ALL have our own battles to wage in this world. We ALL have our own scars to bear. And quite frankly, I'd venture to guess that most people don't come close to bearing their own scars OR overcoming their own battles nearly as gracefully as our kids do. I know that I haven't overcome my own demons with even a fraction of the grace that my own three year old has her own, nor faced them with even a smidgen of the determination and sheer joy she has. My greatest hope is that I am raising her to know her worth, to see her own beauty, to take pride in how far she has come and to truly believe that anything her heart desires is hers for the taking.
    I love your heart. It mirrors my own. :)