Walking Center Stage

I once read that when you are the mother of a “special” child you have to become accustomed and comfortable with being the center of attention everywhere you go.  It’s true.  Being the center of attention for my child is usually not so bad.  To be honest, Matt and I are pretty proud parents and we think Lukasz is just awesome because of his uniqueness.  Until recently, answering polite questions while Lukasz was politely smiled at and encouraging wary children to say “hi” to our Wookie was a fine kind of center stage.  He was young enough that no one much paid attention to his “differences” because he was a lot shorter than the kids that would notice and the kids his own size were too young to be aware of such earthly things as how many eyes or ears their friends have.

I thought I understood from a lot of experience before Lukasz what that author, whoever he or she was, meant.  We’ve been center stage for quite a few reasons: fate seeming to prefer to give us children in close pairs; having four kids (now five) with us in public; a beautiful daughter with hair and skin that do not match our four boys; and, four adoptions in every which way adoption comes.

Please understand before you read on that we went into adopting Lukasz totally prepared.  We knew what our life with him would be like and the challenges we would face.  We love our lives with Lukasz and would have it no other way.  It’s not that 1 or 5 or 20 comments or questions bother us.  It just adds up and wears on us every so often.  An honest depiction of our lives would be incomplete without sharing the low points, too.  It is just important to express these down times so other families we hope will adopt a "different" child will be prepared for the exhaustion and sadness and will know that while they are hard moments, they are transient.  The joyful times more than out number the low times.

The Positive Effect of Children Center Stage

My husband and I have had a lot of experiences with our other children that we have often compared to celebrity treatment.  Our first two, Iain and Learned, were only 6.5 months apart and adoption allowed me to indulge my dream of having twins; I dressed them alike for 2 years and they were SOOOOOO adorable with their feathery white blonde hair.  Everywhere we went people stopped and smiled, came over to cue at them and ask them little boy questions like “don’t you just love Superman?” and “What’s your favorite Toy Story character? Woody or Buzz?”  Then they would congratulate me on what a lucky mom I was, how beautiful our boys were.  I feel myself puffing up with pride just remembering all those comments and fond looks.  And it didn’t hurt that Iain had the outgoing personality of a charismatic, mischievous imp and Learned was the epitome of a sheepish angel.  The grumpiest grump fell over their smiles when they laid eyes on them.

It was a beautiful, spiritual thing to see how a few seconds with an adorable, laughing toddler or two would infect anyone who crossed their paths.  You could see that grumpy ogre practically skipping down the aisles of Walmart after just an exchange of a little wave with my boys and, oh my, the elderly practically aged down 20 years.  They really did lighten the mental and emotional load just minutely enough to take the edge of the daily annoyances. With Millie and Padraig, same thing.  Lots of cues and love and smiles. 

More times than I can count, strangers insisted on giving my children gifts. At a breakfast restaurant a man sitting with his wife gave Millie a stuffed lobster he won from a robotic arm arcade game.  He and his wife both clearly enjoyed watching her hug that lobster. In line at the grocery store, a man behind us could not be dissuaded from giving each of my children a dollar to pick out a candy.  At first, I always tried to resist but I soon realized that these little things made these strangers happier even than my gratefully surprised children. People walked away happy.  Or at least happier.  More importantly, I learned that I should never judge how anyone was going to react to my children.  I try to be a conscientious, curteous mom.  I want my children to behave in public.  But I learned slowly that a lot of the crotchety stares I would get as my children laughed and sang loudly in aisles were not crotchety at all.  As we passed, these apparent grumps would crack a slight smile and tell me they remembered those days. The mean looking old ladies in church who I was trying not to disturb with my crying toddlers would reach over with a giggle and take one of them.  I learned that sometimes, those crotchety facial expressions don’t mean anything—sometimes people are just so used to being on the defensive to the outside world their faces just freeze that way.  The good feelings my kids caused were felt despite outside appearances.

To this day I am convinced that all those mere seconds of bliss we feel when we glimpse a little child who is happy or try to smile a crying toddler out of sadness as we pass or when we feel moved to give a little trinket to a child are what add up to a great force that keeps chaos, misery, and despair from overriding society.

“Children of Men” came out during this magical period of my older two boys’ toddler years.  If you do not know what it is about, I will summarize:  people can no longer procreate for some unknown reason. Society has crumbled into disarray, paranoia, and despair.  The government desperately encourages young people with various incentives to attempt procreation and the elderly to commit “self euthanasia”.  A pregnant woman is found by a group of rebels who are fighting a tyrannical, desperate government (has the word ‘desperate’ been mentioned?) who imprisons anyone seen as a threat.  The baby is born during the dangerous journey through anarchy to get her to safety.  Gunfire, soldiers shooting at citizens, etc.  They can no longer hide the baby but when they are trying to escape a dilapidated building in which people are shooting at each other and soldiers are trying to take over, as soon as anyone sees that newborn, the firing stops and everyone, EVERYONE, immediately stops to stare in wonder and waits until the baby is safe.  The baby brings joy to an elderly woman who dresses the baby in an antique christening gown that is the only baby clothing around and sings almost forgotten lullabies.

To say the least, life without children is bleak.  The worst in people multiples.  It was clear in my mind that what sunk humanity to this low was the lack of children.  Even if you don’t want your own, don’t particularly care for them, you are nonetheless positively effected by the existence of children.  They are the embodiment of the promise of a future with or without you in it.

So when we adoringly brought Lukasz into our lives, I was convinced that I had this center stage thing down. However, our center stage experience is not the center stage that the writer I mentioned was warning parents of “special” kids about.  Center stage with Lukasz is different.  

Center Stage With Lukasz

I will always jump into the foot lights to dance with Lukasz.  If we could just dance there while the audience applauded and threw roses, my story would stop.  But our center stage is not the target of applause.  I feel like we are performers that have to explain Shakespeare for the first time to each individual spectator.  Performance after performance.  And sometimes to the supporting cast as well.

So, I am a mother trying to combat the creep of cracks in my smile with which I reassure more and more mothers of 3 and 4 year olds who are inconsolably afraid of and run from Lukasz that “we know he (or she) can’t help it; they are not trying to be mean; it’s just their instinctive reaction.” That smile has really started to feel like a mask and the impenetrable wall holding back absolute despair for my child’s feelings is slowly leaning.  I know that wall will give way and I only hope I am alone in my room when the flood comes so Lukasz does not misunderstand that I am hurting for him, not because of him. 

On Saturday, one of Padraig’s preschool friends had a birthday party at a downtown park.  It also happened to be the day of the Oklahoma City St. Patrick’s Day Parade.  The park was, therefore, mobbed by families who decided to enjoy the post-Parade afternoon at the playground.  This had not occurred to me until we walked across the street from our parking spot and through the Myriad Gardens to the park.  From 50 yards away I saw all those people.  Instantly, I knew that I would be answering questions, deflecting fear and moving Lukasz away before he realized that his feelings were being attacked. The thought exhausted me.

For the first time since having Lukasz home with us, I almost turned everyone around and went home.  For the first time, I just didn’t want to have to explain that Lukasz is normal but different to another person.  I didn’t want to have to pretend to smile while another child said “but his face is creepy” or “what is that on his face?” (meaning the skin tags that would have been his right ear—we actually had a child innocently say, “why does he have chicken parts on his face?”) or burst into tears or simply ran away when they looked up and saw him standing next to them at the swings.

I thought about an incident at Iain and Learned’s running club just a week ago.  Iain was playing tag with a couple of his friends while we waited to start our run.  He decided to include Lukasz and made him “it.”  One of Iain’s friends thought this was a great idea and ran around pretending Lukasz was a monster and acting terrified.  This particular “friend” has been purposely cruel for fun towards Lukasz before and I have tried to limit Iain’s time with him.  I had to explain to Iain that his friend was being mean and walk Lukasz away without making a scene. It’s exhausting restraining yourself from telling an 8 year old that just because a child looks different doesn’t mean it’s OK to treat him like a monster for your own pleasure.  I have already tried to kindly redirect this child before to no effect.

So I wanted to leave that park before we walked through the gate. But I didn’t.  We went on to the party with the wonderful families who know Lukasz as P’s little brother and I set my smile to serve Lukasz’ future self-esteem.  He is not going to back out of a social engagement due to fear or exhaustion and he must learn to be strong when people are cruel or when little children run away from him terrified.  Oh my God.  That last one REALLY sucks.

There is just so much guilt and sad feeling for everyone else that also goes along with my own exhaustion, impatience at the fearful and love for Lukasz’ feelings.  I feel guilty that I get frustrated at children who can’t help the way they feel, guilty that I am adding to the burdens of educators who must not only teach but also find a way to both console and teach the child that turns toward the wall, cries and refuses to turn around when Lukasz walks into the room.

We went to see Dr. Kane for Lukasz’ follow up appointment on this Monday.  He said Lukasz’ head looks great.  And Matt and I fully agree.  Dr. Kane told us that he would do a scan in a year but no other surgeries until Lukasz is around 6 and then he would reconstruct his lower right jaw. Great news.

But I was also fresh off of my low point of the post St. Patrick’s Day Parade desire to flee, so when Dr. Kane also said that he had been thinking about my mother’s request to remove the skin tags from Lukasz’ cheek and that he really did not want to risk removing them because the tissue may be useful later, my heart sunk a little.  I don’t know what came over me but I just felt deflated.

I told him that we’d really like to remove the skin tags if we could.  And before I could stop, I explained that comments and stares and children’s fearful reactions were getting worse. I explained that a child that attends a class at P’s preschool bursts into inconsolable tears and hides when he sees Lukasz, that so many more kids than ever cannot be convinced to play with Lukasz after seeing him, and that I am terrified of the possibility that there will be a child like that in Lukasz’ class when he starts school this coming week.  I ended with the pitiful hope that removing the skin tags might help.  I am sure he and his nurse thought I had lost it.  In my defense, I had been in a car for 4 hours with three kids and was exhausted.

To both Dr. Kane and his nurse’s credit, they were incredibly compassionate and Dr. Kane said that he would remove the skin tags, of course.  Honestly, sitting here now, I know that removing those skin tags aren’t going to help much.

In a way, I feel like I am going through the famous adoption advice of “fake it until you make it” (if you don’t know what this refers to, it is:  if you don’t immediately fall in love with your adoptive child, pretend you did and eventually you will) in reverse. I have never had a problem with falling in love/bonding with any of my kids.  To be honest, if I was standing in front of my house and you told me the kid walking across the street was now going to be mine, I would truly be able to say “OK, that kid is mine, I love him and will literally through myself in front of a truck for him”.  I have always known that accepting a child as my own was just a matter of a decision or grant of permission for me.  Like a switch in my heart that just needs to be flipped, never to be turned off. 

My love for Lukasz is so strong. Yes, the first day of jet lag and meeting him, seeing his institutional delays, was difficult but I knew I would love him and die for him. Since then, there has been no question.  I have proudly taken him out everywhere we normally go smiling and barely noticing the looks.  It’s been a lot easier here than in Poland.  But I always work to be upbeat, wear a smile when I answer questions or tell a child, “he’s ok, he just looks different”.  And I mean it.  My husband and I made a decision that we want Lukasz to see our positive attitude, our belief that his differences are no big deal and he can do anything his siblings do so that when he grows up he will be positive and confident when people ask questions, stare, etc. 

But I find that where that smile had been natural, it is now a fake.  I know I am faking a smile to explain to yet another terrified or unsure child that he was just born that way and in my low moments I am thinking, “where the hell is your imbecile parent?  Why isn’t she or he over here reassuring you?”  That’s not often and that is NOT fair to anyone.  I am the one who knows how to explain Lukasz to other children (and their parents) so it is MY job if I want Lukasz to learn how to react to the world in a healthy way. 

At these moments I understand the absolute drowning darkness of spirit Joseph Merrick must have felt because I know that Lukasz’ issues are nothing to the extreme as his.  But Mr. Merrick represents my greatest fear for Lukasz; that he would have to wear a bag over his head to walk down the street in more peace than without it. Oh, Mr. Merrick was the “Elephant Man” and if you know him only as the Elephant Man perhaps you can now understand the fear I would have for my son—that society would only recognize him by his “disfigurement.”  Not by his grace of spirit and intellect; with which Mr. Merrick was also blessed.

To be honest, and forgive me this quick moment of anger, sometimes I really start to resent having to assuage the feelings of other children and parents when it is my child who has the burden of carrying his differences into every aspect of his life and who’s feelings are more permanently injured by the reactions of other children than those children are affected by their fears.  They can go home and either not think of it again or, at worst, be afraid for a day or two and overcome it. Lukasz will be walking into rooms and watching small children run away from him his whole life.  When I am not there, will anyone comfort him?  Will anyone be there to remind him that those children can’t help it; that they aren’t doing it to be mean?

Attitude Makes All the Difference

On Sunday, at the zoo and at the McDonald's playground I found myself experiencing feelings I had not felt since walking in public in Poland.  The feeling that people were looking at us with horror and revulsion. A minority, of course, but the minority tends to set you on guard. We had more negative comments than we have had the entire year and a half Lukasz has been with us.  

While the comments themselves from children were more hurtful than usual (although still innocent because they were just responding with a visceral reaction, not intentional meanness), it was the response of their parents that hurt and reinforced the comments. 

When walking into the play area, we passed a 13 year oldish boy sitting with is family.  He said, "Oh, gross, look at his face!"  And his mother in an embarrassed tone said, "SHHHHHH! We don't say that."

At the zoo, a child said, "Yuck, his face, Mommy."  In a worried tone, his mom said, "Don't say that!"  Another child, "That boy only has one eye, Mom." A hurried, "SHHHHH!" and the mom steered her son away.

And from one parent walking with his children, "Oh, my God, that poor kid."

The attitude and tone these parents had when they made their comments were hurtful because I know what it will teach these kids --"Yes, his face is Yuck, but we don't talk about it, we don't say it, and we will get away from it as quickly as possible."

At the least, being summarily hushed with a tone that implies embarrassment, fear or worry, make children feel guilty for asking their guides in life (their parents) about something they've never seen before. They need their parents to tell them in a non-chalant way that "he was just born that way" or some other such explanation so they understand that Lukasz and other people who are different are normal, just different. If you are scared, repulsed, etc., your children will pick up on it no matter what your words.  Please don't silence your child, even if you are just trying to save my or Lukasz' feelings. It just makes him a subject not to be spoken of or to and reinforces their fear of him.

Children are concrete thinkers.  That means they understand better when they can see the subject in front of them.  Waiting to talk to a child later or "when we get home" will lose the well-intentioned affect of whatever you tell him or her. Not to mention they will hardly remember who you are talking about.  All they will remember is that you told them (without words) that my son is something not normal; that is not to be discussed and probably something they should avoid.  And children ridicule what they think is not normal.  Making my son a subject to be spoken of only out of his ear shot teaches your children to whisper to each other about him or other different children rather than approaching them.  He will hear the whispers and that is hurtful.

Does Lukasz' Age Make a Difference?

In the past 1.5 years that we have had Lukasz, we have rarely had a negative comment about his appearance.  Plenty of curious questions and stares. Those don't bother us at all.  I don't mind that people want to know why he only has one eye and one ear.  I don't mind that they look at him as long as it does not continue for an uncomfortable length of time or if they are playing with him and being kind while they look.  He's different.  We get that.

I have noticed that as Lukasz gets older, more active, more social, more eager to initiate interaction, the comments, stares and questions have increased and the fear/reluctance in other children has increased. Likewise, the responses from parents have taken on a new negativity in tone and manner even if they are the same in the words they choose.  I think it was easier for parents to see Lukasz as a little baby they hardly had to look at, who would just walk around and play by himself; they could just glance and look away.  It was easy to quickly say, "Oh, honey, he was just born that way, he's just made different."  But when a toddler is running up to them, looking them right in the face, asking them to play and he looks SO different, they feel a little bit of that "Oh, my God" feeling their kids feel and they just want to quickly look away and quiet the comments that remind them of their own feelings.  They don't want to hurt feelings and they know they shouldn't feel the way they do but they can't muster up the courage to do what they should be telling their kids to do--talk to Lukasz like the normal kid he is.

Lean Into It

Lean into Lukasz and you will love him.  Look at him for a couple minutes and you won't even see his differences anymore.  Do it and your kids will see and they will do it, too.