Wednesday, January 16, 2013

things that are needed.

i have waited quite some time to share this first story.  i could not, for so many reasons, put these words out there for the world to read. i have fear that someone will read them and use them as fuel in a fire i'm not interested in being part of. please do not use my words for that.  and do not respond with hatred or malice for the one who originally said them.  the way we change others is love.  but they need to be shared so you can understand something bigger.  so read the story, but please don't comment on that one small part of what i'm trying to share here.

jason, shilo, and i sat in an emergency room.  shilo was sick.  there were lots of things going on around us.  a doctor walked in.  the attending doctor, not the residents or fellows who had been caring for her.  she asked a few questions about health and history.  i answered.  and then this, 'did you know, before she was born, that she was going to have down syndrome?'  i could feel my heart beating faster and louder at the question.  i knew that lots of people had been asked this question.  and i knew that if followed with a yes, there was often an inquiry of why one didn't abort.  i spoke confidently.  'she is adopted.  we intentionally set out to adopt a child with down syndrome.'  deep breaths.  deep breaths.  'oh!  how noble of you to adopt a child that is such a, such a....i'm trying to think of the right word.  such a burden.'  i didn't respond. i couldn't respond.  she walked out a few seconds later.  jason tried to convince me that she was attempting a compliment.  i tried hard not to find her and tell her that i didn't want her to take care of my daughter if she saw her as a burden.

you need my daughter with down syndrome.  you need people with special needs, disabilities, cognitive delays, and physical limitations. they are not a burden.
i could tell you about how people with special needs often end up with siblings in a service field.  i could share this story with you to show how they develop compassion in others.  i could tell you how our daughter with down syndrome, in ways we never could have predicted, has knit our family together closer with each breath she takes.  but this is not why we need these people.
we need people who are different than us, who have limitations, and who are often seen as a burden to society, to realize what it means to be human.  first corinthians 1:27b says, 'God chose the weak things of the world to shame the strong.'
when we take out those who's abilities don't hit the standards everyone else does, we become the people of babel.  let's build a tower so that nothing bad can ever happen again.  we can keep out the things of the world we don't want to happen.  no tragedies here.  no drunk man crying on my sidewalk because he witnessed his dad get hit by a car.  no little girl lying in her bed right now who could have a tumor looming and we don't even know it.  we have conquered the world and have rid it of all things deemed 'uncomfortable' to look at, hear about, or think about.  yes, our world is perfect and we can move on to greater things.  we, as a people, are perfect.
but, ridding our world of the weak things will prove only to do what those who are weak already do: it will shine a great light on our own weaknesses.  it will remind us that walking, talking, breathing, and living may not always be easy, and it may not always be possible.  it will take away the miracles that are found in everything.
 it is a miracle when two people come together at just the right time, and somehow,that 25% chance of becoming pregnant, takes place.  nine months later, a child is born.  46 chromosomes all intact and accounted for. no more, no less.  all genetic material is present, all organs work correctly.  they roll over, sit up, crawl, and then walk.  they learn new things every day, and grow up and start the cycle over again.  truly miraculous.
it's also a miracle that jason and i can come together at just the right time, and our bodies cannot procreate like they were designed to. it is a miracle that my oldest daughter has more than one disorder in her body, and still is able to live each day doing things typical four year olds do.  it is a miracle that my little had five heart defects, and each one played off of another in a way that if that other hadn't been present she would have died within minutes of birth.

i know our world works hard on finding cures, fixing things, and medicating away uncomfortable.  some of that is right.  some of it is needed.  but we also need those uncomfortable things.  we need to be reminded that some things are unfixable, and some incurable.  somethings that might seem like a burden, will bring about great insight into a world that is only common and ordinary without them.  and sometimes, those things we see as burdens are born with the most beautiful, almond shaped eyes, and the kinkiest curliest hair, that one has ever seen.  and sometimes you fall hard and fast in love with them, even if it means your life might have days of hard and ugly.  and sometimes, when you look back at things that seemed hard and ugly at the time, you might even be thankful for things, like the miracle of not getting pregnant.


  1. *wild applause* You rock my world. :)

  2. todays' words - the broken teach the strong.

  3. This was beautiful!! I will admit my jaw dropped open when I read the doctors response to your answer. It takes education. And I agree with you, God doesn't make mistakes. We need people who are different from us.

  4. Powerful. I needed to read this today. Thank you.

  5. Good! BTW, I love your family picture.

  6. Burden? There are plenty of "burdens" on people and society as a whole who were born without Down syndrome. I have yet to read about a Down syndrome adult who opens fire on a group of children...or squanders hundreds of clients money....or molests 20 children. Burden??? That doctor obviously doesn't understand the term burden. Turn on can read about "burdens" everyday!! I'd much rather have Shilohs in our society than Bernie Murdochs. Thank you very much!!