Sometimes a look hurts more than words.

One of the new rules in Iz’s class with her new teacher is, “Keep your hands to yourself.”

It’s a rule to make sure that she doesn’t hurt someone else…or that her actions don’t bother someone who isn’t asking to be touched.

I want to expand on that…

“Keep your face to yourself.”

This past weekend, I’ve been trying to give my family some normal.  I am really trying to venture out into the world for the sake of my best girl and the sanity of my husband.

Luckily, “venturing” out is limited with the weather cooling off and our instructions to stay away from crowds during our recovery time.

So…we venture out on walks in our neighborhood or to the park.

Yesterday, I experienced my first ever, “Stare at the kid with the strange face and thing coming out of his nose and continue staring and making faces until it makes the lady holding the baby so uncomfortable that she leaves.”

Craig was busy chasing Iz on the playground so he didn’t see what happened to me.

I had Evan in the baby carrier facing out so he could see the world.

His little feet kicked.  His mouth would giggle and squeal.  His arms would flap in excitement as he saw this new world we call “outside” like it was the first time.

I was loving it.  I loved that my family was together.  I loved that my boy was enjoying being normal.  I loved it.

A family of 4 – with two twin boys – probably 18 months or so – strolled up to the playground.

My back was turned to them and I turned my head towards the family and gave them the obligatory half smile.

I would give Evan kisses and point out different things – the clouds, the puppies, the birds, the grass.

I finally turned and sat on the bench directly facing the family that was on the slide.

As soon as they saw the baby I was holding…the whole dynamic changed.

Jaws dropped.

Whispers started – between parents.

Staring commenced.

I stood up…decided I would be the better person and ignore their stares.

But, their judgmental eyes followed me.  Their looks of disbelief cut through me.

Apparently – subtly was not their strong suit.

At one point, the Dad forgot to catch his 18 month on the slide because he was staring so hard.

I didn’t say anything because Iz was so close by.

I didn’t say anything because I was near tears.

And my boy was having too much fun…enjoying that moment….for it to be ruined by my tears.

I decided to head home after a few more minutes.  Told Craig it was a bit chilly for Evan and needed to head back.

I thought about how this affected me.  And suddenly became very sad for my boy.

Those people have no idea what he’s been through.

They have no idea that the feeding tube coming out of his nose doesn’t just keep him alive…allows him to thrive.

They have no idea that his “face” they could not stop staring at is a face I kiss daily, almost hourly, in thanksgiving to God.

Because my boy is perfect.

I also don’t know if their stares were meant to be in malice or just out of shear curiosity.

But, the stares, the faces, the expressions, were hurtful.

So, here’s a list friends, to take to heart for you and to perhaps share with your children, on how to react if you see someone who is different than you:

1.  Get the stare out of your system:  I get it.  If something is not of the “norm”, it’s our natural tendency to be curious about it.  If you see a special needs child or person, it’s ok to look at him/her.  But, quickly do it ..and send a smile after the quick second you turn your head.  Because reality of it is, the “abnormal” you may be gazing at, is the nothing but normal for him/her (or the parents that love him/her).  And remember – these are our children – not a car wreck that you bottle neck to see the damage – these little people are not bad in any way….not ever.

2. Only smile:  No other expression is welcome.  No looks of sadness for the person. No pity glances.  No looks of fear.  I guarantee you the person or family you “feel sorry for” feels a million times more blessed to have the special someone in their life than you could ever imagine.  And remember – cleft lips, heart defects, mental shortcomings – aren’t contagious – so please don’t act like breathing the same air as my kid will somehow pass to your perfect offspring.  There’s a better chance your wet coughing, green snotted, “healthy” child can pass something on to mine.

3. If you’re curious, ask:  I’d much rather have someone come up to me, ask me about Evan, than just continue to stare.  I’m all about raising awareness.  I’m all about sharing Evan’s testimony.  He’s one tough dude. Just staring at us, makes me think that you are making judgments about me or my boy.  And, yes, call it paranoia on my part, but I get to be paranoid….someone is staring at me and my boy like we are from another planet.  And to be honest….I’ll probably give you a high five…it takes some cajones to go up to someone and ask, “Sooooo….what’s up with your kid?”

4.  Take a cue from your kid:  Parents tend to be the worst at staring.  Kids, tend to stare for a minute, then go on their way.  Maybe it’s the short attention span of littles, but they lose their interest and move on. Do that…refer to #1.

5.  Teach your kid:  That different is ok. Of course you can’t do this step until you teach yourself – that different is not necessarily a bad thing.  Teach them (or yourself) that blessings come in all sizes, all shapes, all packages.  Sometimes – a baby can have a smile that looks different. Sometimes – a kid has extra scars on them – maybe on their face or on their chest – because they battled through some pretty tough stuff that should be celebrated.  Sometimes – a kid may not be walking or talking or eating like other kids do – but it doesn’t mean that the kid is any different than yours – it just means it may take that kid a little longer to get to those milestones – because they just reached some other pretty big milestones like surviving open heart surgeries, spine surgeries, or other some other medically necessary thing that got that kid to this today.  Sometimes – that baby or kid – got to today because they had parents that wanted to give them a chance at a life – because that sweet baby – no matter what science may say about their genetic makeup (maybe they are rockin’ an extra chromosome) or their condition (I say F* statistics…1 in 10000 or 4 in a million….what-ev)  – was the answer to a prayer whispered to God and the kid before them is a living breathing, testimony of hope.

Take it or leave it….my advice.

I hope you take it, though.  And I hope you share it….because I know that many of us…including myself…need a reminder to,

“Keep our face…to ourselves.”

 

Comments

  1. Well said…this really touched my heart. God bless and hold your head up high for yourself and your little miracle, because he is nothing but one!

  2. I am so very very sorry about the rudeness. And this coming from parents who are supposed to be educating their children how to behave in different situations. I know don’t stare and don’t point were two staples in MY mother’s repertoire

    My initial reaction would be to make some snarky comment to these looky-loos that would put them in
    their place, but that would be breaking another steadfast mom rule and a few societal ones about turning the other cheek and being nice to people even in the face of bad behavior.

    Perhaps you could get a hand held fan…one of the square types with wooden handles given out at pic-nics and such, and attach a sign that says, “If you want to know – ASK- it’s okay”. The next time you get inappropriate stares from rude parents you could whip it out and let them read it. Not only would it probably give them a kick of embarrassment for being reminded that they are in fact being rude – but it may open the door to being educated about Evan’s miraculous journey and in turn they can educate their children, turning negative behavior into a positive lesson about compassion and understanding.

    If they decide not to ask, they will at least hopefully learn not to stare.

  3. This is great advice. When my son was 7 he was hit in the head with a baseball bat by another child. it broke a piece out of his skull which penetrated his brain and he ended up needing surgery, They shaved half his head (this was before shaved heads were popular) and he had a scar along half his head that protruded. The first time we went to a store after surgery it seemed as though people lined up to point, whisper and stare. My son was embarrassed and about to cry when all of a sudden he climbed on the railing and yelled out, ” I am not a monster!! I am just a kid that had brain surgery!!! If you want to know what’s wrong with me ask me but quit staring at me!!!” I was so proud of him I thought my heart would burst. Just remember that your son is a warrior and if he had the ability to talk I am SURE he would do something similar. After my son did this was they day he started wearing his scar like a badge of honor, and still does to this day. He is almost 35. Also remember that the Dr’s told me he would either die or be a vegetable from the injury but he did neither. God had other plans. Just like I know and pray he does for your beautiful, warrior son!!!

  4. Thank you for sharing this experience with us. I will be purposeful at teaching my children the things you have listed here. I hate that people can be so hurtful even if it is not intentional…. Thank you again.

  5. This breaks my heart. Your son is a blessing and a gift from God. People can be so mean and hurtful shame on those parents for not showing there children God’s love and that people are different. I find more and more people these days are so focused on perfection on the outside that their insides are very ugly.

    I will pray for you and that God will use your son as a “light” to the world. I’ve started seeing that people that are different are little angels brought to show us things we can’t see otherwise.

  6. i’m a little clumsy with words, but i want to convey how much this post meant to me. i’m 30 and have gotten my own share of stares that hurt for their own reasons. i have friends with special needs children, friends who have been hurt in the same way by strangers gawking at their beloved baby, at their FAMILY, like they’re the new sideshow come to town. “keep your face to yourself.” – this is such a beautiful piece of advice! stares are natural, but they hurt! i am so sorry that this is a trial you are going through, but thank you so very much for the conclusion you came to, and for sharing it with us.

  7. {{{HUG}}} Czarina I am sorry that you had to experience this duirng a time when you were relishing in the happiness of spending time together with your family. I had that happen two years ago while at the swimming pool with Logan. He does not have the typical “heart surgery scar”. His is not the faded line that people barely notice. His is a a crude looking scar due to keloids he developed so it is very obvious…..like he has his own personal neon light pointing directly to his chest. A group of moms did the whole let’s stare until we can no longer stare anymore gaze. It was hurtful. Thank you for shairng your story and offering suggestions to others on what they should/shouldn’t do.

  8. That couple could have learned a great life lesson if you had very kindly walked up to them and ask if they would like to hear about Evan. Instead of staring, they could have looked beyond his differences and seen how we are all more alike than different. “Isn’t it a beautiful day? I see you are enjoying the park as much as Evan and the rest of our family. We are so happy to get out of the house while he recovers from his heart surgery 2 weeks ago. Don’t you think he looks happy and healthy.” It would take courage to walk up and meet someone like that, but from what I have observed, you are up for the task. Sometimes, people stare or just look away because they don’t know what to say or how to start the conversation. A few years ago I participated in a training for people with developmental disabilities. I live with Major Depressive Disorder, which is a disability even if you can’t see it.. Many of the people in our class were in wheelchairs. Normally, I would just look away and wonder to myself what happened. After spending 1 weekend a month with these people for 8 months, I started to realize that I no longer saw the wheelchairs or their disabilities. I saw the beautiful, intelligent human beings that became my friends. It was truly life-changing for me. When people know better, they do better. Those people missed out on a chance to grow as human beings the day they stared at Evan. If only they would have taken the time to know him and love him the way we all do. By the way, Normal is only a setting on a washing machine. So happy you guys are able to get outside. Evan and your family have an entire army of people who admire you and have your back.