Thursday, September 12, 2013


I was always kind of wary of posting pictures on the internet.  I enjoyed going on facebook and seeing my friend's kids, but I was reticent.  I posted pictures every once in awhile, after all, my kids are pretty much the cutest things you will find on the internet.  But I worried vaguely and I did not post often. 

Then Sarah was born and pictures were even more rare.  I was always in the hospital, so the pictures I had were rarely good.  Lighting is not good for photography in hospitals.  Even if I got good pictures, when could I post them?  I was either at home and insanely busy or I was in the hospital with spotty internet. 

Then things started to settle down.  I was not in the habit of posting them, so I didn't, at least not often.

Then an awful thing happened to one of my new friends on facebook.  Pictures of her beautiful little girl were stolen and captioned with horrible captions.  That gorgeous baby's pictures went viral captioned in ways that would make any mother cry.  I did not think of myself as being a frightened so much as being protective, but I consciously stopped posting pictures.  It did not make a huge difference, since I had not been posting many anyway.

The mother of that baby did not cower in the corner.  She stood up for her baby.  She confronted the bully who had stolen the pictures on his twitter account.  She repeatedly called him out.  She contacted Twitter and Facebook, demanding that the offensive pictures be taken down.  The bully was unrepentant.  Twitter and Facebook denied responsibility.  It was a nightmare.  So she went public.  She created an account and attracted a huge following of supporters.  She contacted local media.  She speaks proudly about her daughter and is not intimidated by the bullies. 

I was intimidated. 

My experiences with my Sarah have been mostly positive, or at least not negative.  People don't always know how to act, but I can count on one hand the number of times someone has been deliberately offensive.  (Two, if you must know.  Mom's do not forget these encounters.  Both times the aggressor backed off when I spoke up.)  What would I do if thousands of people were laughing at a picture of my baby?  Seeing someone else's baby attacked in that way hurt awfully.  It was very hard to keep believing in humanity when an attack on a three month old gets a few hundred thousand likes. 

But, there are also lots of uplifting pictures all over the internet.  The one I saw today was of an incredibly cute little girl, apparently with Down's syndrome, captioned, "See, the thing is, I have a really awesome life and there's no prenatal test for that." 

Then I saw a study that says that exposure changes attitudes.  The study showed that kids who spend time with kids who have disabilities are more empathetic towards kids with disabilities.  That's a mouthful of obvious.  Still it was what I needed to face my fear. 
"You are the light of the world. A city set on a mountain cannot be hidden.  Nor do they light a lamp and then put it under a bushel basket; it is set on a lampstand, where it gives light to all in the house.  Just so, your light must shine before others, that they may see your good deeds and glorify your heavenly Father."  Matthew 5:14-16

No more hiding the light.  My daughters are beautiful. 

I will share pictures.

Wednesday, September 11, 2013


Thoughts on 9-11

Today my oldest daughter went to school.  She was dressed in her red, white, and blue.  I wondered if they would talk about what happened twelve years ago.  They didn't, at least not in her kindergarten class.

I did not want to tell her.  It is too awful.  I do not want her to live in fear.  So I didn't.  I just told her that today we are celebrating many people who have made sacrifices so that we can live in our wonderful country.

I've been thinking about sacrifice.  And forgiveness.  And anger.

Twelve years ago, some evil men made it their business to attack our proud country.  They believed that by bringing down symbols of military power and economic prosperity, they could bring our country to its knees.  American heroes stood up and astounded the world.  When the towers were falling, our heroes ran toward the destruction to help.  When passengers realized they were on a weapon aimed at DC, they did not turn into helpless captives, they died protecting the target.  A lot of people died that day.  A lot of families will never be the same.

America did not fall even an inch.  We stood a little taller the next day, heartbroken but proud.  It turns out that money is not what makes America proud.  Nor is military prowess, though indeed we are proud of our military.  The pride of America is hard to pin down.

Our military fights to protect the right to speech, even when the speech in question is given by pacifists.  Like siblings, we fight and argue and call each other names, but don't you dare think that just because we are attacking each other you can.  In America, when see people who need help and we argue about how to help, not whether or not we should.  In America, we have a particularly arrogant group who call themselves a Church- and when the Westboro Baptists speak their hatred, we let them- but we are proud to report that in classic American style, a group of bikers ride around the funerals to protect the mourners from hearing the ugliness.

We are diverse.  We do not have diversity ironed out neatly- discrimination happens.  But we try.  We are not getting it right, but it is absolutely a priority.  We aim high.

The majority of us are Christian, a source of great pride to some.  Still greater pride though, is in our insistence that a majority cannot dominate.  Did you see the video about the soldier who stood up to vicious discrimination?  "That's the reason I wear the uniform- so anyone can live free in this country."

That is the America I am proud to claim.

It is terribly easy to hate in the abstract, but it is hard to hate people you know.

I will have to teach my daughters about what happened twelve years. They will see suffering.  They will see anger.  I will have to teach forgiveness.  Fr Barron says, "One way to practice forgiveness is to say, in regard to any hurt, insult, or injustice that has been done to you, “this is our problem,” that is to say, a problem that has to be solved both by you and by the person who has offended you.  This is not to indulge in “blaming the victim” politics or to be soft on evil, but it is a willingness to get down and do the hard work of drawing an offender back into the circle of the community.  It is a loving refusal to give up even on the wickedest of people."

We are not honoring victims of 9/11 or waving a proud patriotic banner when we spew hate toward Muslims.  In America you are free to speak.  You are free to think.  You are free to believe.  You are free to preach.

We have some big problems in this country.  We have millions of undocumented people, living in the shadows.  People go bankrupt paying for necessary medicine.  Important issues like abortion and homosexual marriage bring out the devil in all of us.  But every once in awhile, we get to stop and realize that we can have these fights because we are in a pretty awesome country.

We don't happily coexist, we disagree loudly.  That loud disagreement is at least part of the pride of America.

Monday, September 9, 2013

Open letter

Open letter to all parents:

Dear Moms and Dads,

I want to talk about something uncomfortable.  It has come to my attention that many of the best among you are making a big mistake.  I understand.  I was too, two years ago.

My daughter has a rare genetic syndrome, called Apert syndrome.  When she was a baby, the plates in her skull fused together.  That meant that there was no room for her brain to grow, and she needed surgery right away to relieve pressure.  Her head is larger than average.  When she was born, her fingers and toes were fused together.  She has had the first surgery to separate her fingers, so now her thumb and pinkie are released.  She has a tracheotomy, so she cannot talk yet.  Because of various complications, she has spent a significant portion of her young life in the hospital.  She is developing muscles that she needs to sit up on her own and to walk.  She will do these things, but for now she is in an adaptive chair.  My beautiful girl stands out.

 I already have to teach my girls that some people are just mean and you cannot let it bother you.  I already have to teach my girls that loving people who are mean is part of what it means to be Christian.  I am trying to teach them that most people are good, and that is where you come in.

When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids.  They look.  Some are puzzled.  Some worried.  The most adventurous of them ask questions.  Almost all are curious.

Staring is rude.  Pointing is rude.  You know this.  You are embarrassed by your child because they are pointing or staring.  You shush your child and pull them away quickly, and I know you are doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage.  You are teaching your child to be afraid of what they do not understand.  I bet that most of you have a short conversation about diversity and not staring later; you are good parents after all.  I would like to challenge you to have the conversation right there.  Put a smile on.  Say hello.  Introduce yourself and your child.  I will introduce myself and my children.  Your child will ask questions.  Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they are obvious.

Here is the thing: kids categorize.  They need your help, and maybe mine, to make sure Sarah gets into the right category.  They ask questions to figure out how things fit in their world.  When you don't let them ask their "rude" questions, you confirm my daughter as "other."  Believe it or not, every kid I have met who was allowed to ask as many "rude" questions as they liked, learned in just minutes to see my daughter as I see her.  She is just a kid.

She loves lollipops.  She laughs at her granddad.  She has favorite music.  She is going to school this year.  Her favorite color changes all the time.  Today it was green.  She has a younger sister and an older sister.  Her favorite TV show is Veggie Tales.  She is Daddy's punkin and Mommy's sweet pea.  She will absolutely charm you with her wide, blue eyes.

Imagine what my daughter sees.  A sweet little face unable to look away from her.  Pointing.  Then an adult pulls the child away, consciously avoiding looking at her.  Now imagine that this happens over and over again.  She is a bright little girl, and this is very hurtful.

At the very least you can model the behavior you wish your child had shown.  Make eye contact with her and smile.  Anything less and it won't matter what you say about diversity later.  Your kid and my kid both got the same message from your embarrassment: She is "other."  She is something, not someone.  The initial fear was confirmed.  I will take rude questions over that hurt any day.

I am not accusing.  I know it is hard.

There are nasty bullies in the world.  We will get over that.  We will get over the stares and the pointing from people who should know better.  We will get over the nasty comments.  We will get over the name calling.  We will get over it all because, as I told my older daughter, no matter how many people cannot see past her differences Sarah is surrounded by people who love her.  People who see her.  And she is amazing.

Kids are not mini adults.  They are astounding little people.  They are curious and open and full of wonder.  You can teach them to see a child like them when the see my precious girl who looks different and rides in a wheelchair.  You can teach them to see her as a potential friend.  Or, you can teach them to be afraid.  It is your choice.  I won't judge.  Like I said, I was you and I did not know how to act either.  You don't have to be one of the people who love her- though honestly, you absolutely will if you give yourself half a chance- but please, be one of the people who see her.  Teach your kids to see her.  Please.