Observations on Life with Lukasz and the People who Meet Him

1.  It is Very Difficult for Someone to Steal Him or to Lose Him in a Store

Let's face it, four of my kids could easily just disappear into a crowd.  Blonde hair, blue eyes or brown hair, brown eyes plus age and generic kids clothes does not give people too much to go on.  Even a picture is hard to match.  It would be hard for some random person in another city or state to see any of them in a store and recognize him or her as the missing Kane kid. But, gosh, tell someone your son only has one eye and one ear--they will spot him fast.  There just aren't many of those kids out there.  

About two weeks ago the little troublemaker ran off from me in Walmart and I ran all over the store pushing a very full cart trying to find him.  From one fellow customer after another who immediately knew who I was looking for because he is so noticeable and excitedly waved me in the right direction to the employees who ran with me and met us in every department he ran through in response to the  "Adam Alert" issued by a manager (through headphones to the employees) it was obvious the only description necessary was "he only has one eye and one ear".  The employees at each door knew not to let a little one eyed kid out. We finally cornered him across the store in frozen foods where he played monkey in the middle between me, one employee and another at opposite ends of the aisle.  Laughing like a hyena.

Anyway, little chance some evil person is walking out of a store with Lukasz without someone noticing and saying, "Hey, that's the kid everyone is looking for."

At Santa Cruz, the story of my life. Do you see that? He's laughing at me. He keeps me on my toes.

2.  You Get to Feel Like a Celebrity

I would not say that we have a paparazzi thing going on.  It's more like that "secret" photo taking that isn't "secret" that celebrities experience.  You know, like when someone sees a celebrity eating at a restaurant and they try to pretend they're looking at something on their phone but they are really taking a photo.  Or they act like they are taking a photo of a friend so they can get the celebrity in the background. Or randoms are hanging out in a bar or other public place with a celebrity and the celebrity is being friendly but the randoms are being friendly so they can get photos to post on Facebook.

Here are just a few of our's:

• In the pulmonologist's waiting area, a mother took a "just looking at my phone" photo of Lukasz while he was playing;
• At a fast food restaurant;
• In the pool at a hotel, a group of women were swimming and playing with Lukasz and at the end they all took photos of themselves with him--in that "look at me with this once in a lifetime experience" and without asking me;
• At an OKC Thunder game, a couple whipped out their phones and videotaped Lukasz when they saw him about to hug the Cox Cable mascot. They videotaped the whole thing, including Lukasz walking away and then running back for a second hug.  With ooo's and ahhh's.

People think they are being sly holding up their phone on their knee to take a photo, but trust me, it's completely obvious. Of course, the obvious, whip out the phone and photo/video Lukasz doing something normal is just as weird.

When you and/or your son become the object of an impromptu photo opp,  it is totally surreal.  At first, you're not really sure they are taking sneaky photos or obvious photos of your child, because it is so bizarre.  You think, "Noooo.  Really? Are they?"  And by then it's done and there is nothing you can do but ask them to delete the photos and that seems just as crazy.  Every time, it STILL catches me off guard. 

3.  Everybody Knows You

As an average mom, I used to go into my usual Walgreens to pick up a prescription or the grocery store or Walmart or Braum's to buy milk and no one ever acknowledged me as anything more than one of the nameless, faceless masses.  Now, when I (or my husband) go into the store, since I usually bring Lukasz with me, I am greeted with hellos or nods of familiarity and Lukasz is greeted like a beloved family member.  If Lukasz isn't with me, everyone wants to know where he is or give me a look of recognition I would never get before Lukasz.

I have met so many people thanks to Lukasz. While many people might feel put off or get tired of people asking about him or find their questions rude, I have come to see it as an opportunity to meet new people.  For Lukasz' sake, when I see someone staring or a child asking a parent, I approach them and start a conversation including Lukasz so they get to know him as a person.  I would never have initiated conversations with strangers nearly as often as I do with Lukasz.

Also, Lukasz is unforgettable for so many reasons that every teacher, therapist, nurse, dental hygienist, classmate (and their moms), random kid from the park, etc., that he has ever met in his whole life remembers him years later in random places. Anonymity is overrated anyway.

Chocolate milk mustache. Him, not me.

4.   You Are Constantly Receiving Prayers

People of many, varying faiths like to pray for Lukasz and me and our whole family.  Out loud.  In public.  In parking lots, stores, restaurants, parks, etc. They approach me and ask if they can pray for him, specifically, and us, generally. Sometimes they lay hands on him. Sometimes they offer us advice about praying over him to "fix him." A little uncomfortable and strange. I think my faith is private and if I thought someone needed a prayer, I would silently do it without bothering them or making them feel uncomfortable that I thought they needed a prayer. Maybe it's the Yankee in me and this is a Midwest/Southwest thing.

But I have decided I could use all the help I can get from any god someone is willing to pray to on my behalf. Of course, my need for prayers and good thoughts has everything to do with a need for help retaining my sanity and nothing to do with Lukasz' apparent craniofacial differences.

Almost always they ask first and that is good.  However, how could I say, "No. Do not pray for us"?  Seems rude to me or overly defensive. Plus, if it would make them feel good to pray for us, then I do not mind.  And really, even if I didn't believe in God, I would not mind the extra encouragement and well wishes.  Long summer days with all of my kids at home, or with many evenings ahead helping with five sets of homework? You bet I'll take all the strength I can get.

Oh, and while I admit the need for a little morale boost of any kind now and again, I don't believe that the motivation behind the offers of public prayer is correct.  I think these prayers come out of thinking that Lukasz has a hard time with life or that we are sad or that our surgeons need divine help to give Lukasz a "normal" face.  Well intentioned but full of misplaced pity.

I need more prayer for strength to not yell at my kids one more time for leaving five sets of dirty socks in the livingroom than I do for feeling sad about what we consider a pretty darn cute Lukasz face.  His face is not "disfigured", it is perfectly figured.

5.  A Secret Language with Your Son that Not Even his Father Understands

Lukasz' unique anatomy and hearing loss have made speech difficult so he really speaks "signglish"--a mix of ASL and SEE signs and spoken words.  His words are hard to understand and as a 4 year old his signs are not perfectly formed either.  This is hard for him with people he does not know but it is cool for me.  We sign in church to tell the kids to sit or be quiet and when we do not want to interrupt people.  Many times I discover that he and I can have a spoken conversation that most strangers will not understand.

6.  You Learn How to Be Actively Oblivious to the Public

You start out noticing when people double take when you walk into a room with your son and feeling under a microscope--even feeling defensive--but eventually you tune it out.  And, finally, you really internalize what your mom always told you, “Who care’s what people think?”/“Who cares if they look at you?” and you just stop noticing for real.  All that fear of public scrutiny held over from middle school falls off.  I, for one, am a much happier person for it.

7.  People Usually Cut You Some Slack

You’re late, you’re tired, your kids are all over the place.  Lukasz looks up with a crooked grin at the receptionist, the store clerk, the Doctor’s nurse, the Sunday school teacher and you watch the look of disapproval dissolve into a relaxed smile and encouraging word.

Okay, I admit it.  I don't really deserve the slack.  Even five kids isn't really a decent excuse for being late or my house being messy or for my kids acting crazy.  But it is nice that the light shining out of Lukasz' face can buy all of us a little goodwill, which brings me to the next benefit:

8.  You Get to See the Best in People

People do nice things for Lukasz from all that extra slack mentioned above to letting him climb in the UPS truck and brining him UPS mementos to stopping to smile at him and talk to him in the middle of whatever their doing, to sharing their snacks with him to being patient when he wants to pet their dog for 15 minutes when they are just out for a 5 minute walk around the block. One of my favorites is when he insisted on showing his favorite car to every single adult, child and baby in a crowded waiting room.  Over and over again.  It was not enough for them to look and admire the car, they had to hold it, comment and hand it back.

The impulse to give these acts of kindness are just manifestations of the goodness that is always in their hearts.  Sure, maybe some do not show it as often as they could, or those that do are doing it out of pity, but just seeing it in those moments proves that there is goodness in the world. 

I have learned that people enjoy these interactions with Lukasz; that they participate in them with their full heart, with no begrudging of their time or second thought. If it is Lukasz' different face that motivates these sweet, compassionate responses, maybe we should treat everyone like they only have one eye, one ear and half a jaw, the world might be a more compassionate place.

Afternoon at the pumpkin patch. This picture is in black
and white because he and his shirt were absolutely filthy
but in black and white it's not so bad.