Chaos is a Friend of Mine

The last three weeks have been so crazy with kids' school stuff, pumpkin patch, fall parties and Halloween.  Not only all that but Luksasz got his BAHA, we managed to get the surveyor out to our new land to mark out the border between our land and the neighbor, scheduled Lukasz' CT scan and next craniofacial team apt for the end of February and beginning of March, and, not to be underestimated, cleaned out my car--took five hours one Sunday.

An eventful month that kept me so busy that I have not kept up with my email (sacrilege!), running, reading, cleaning (as if I ever do) or cooking.  We've eaten a lot of pizza to get by.   But it has been a good busy and as history has proven, this is just the beginning of a very hectic three months.  The best and most whirlwind time of the year!

So, here is a quick update on all the happenings:

Lukasz' BAHA 4

Finally! He now has bilateral hearing to some degree, they think improved to just a mild loss level on his "no ear side" from zero. The big eye picture is when they turned it on. The bizarre pic is them testing his hearing on that side while trying to plug the good ear as much as possible. Warranteed for single loss or damage replacement for two years, thank goodness.

Which we thought we might have to use the day after we got the BAHA. The next day, I took Lukasz to OU Children's Physicians for an endocrinology appointment. Well, he tried to quickly move out of the way of a mom pushing her twins in a stroller and bumped his head on the elevator door and the BAHA popped  off the soft band and down between the door and floor into the shaft. After an initial sinking feeling in the pit of my stomach, all I could do was laugh and call Matt to laugh about how par for the course this was for the Kanes.

Luckily, the nurses and receptionist were sympathetic and called maintenance.  They asked if it was really expensive because they would have to call the elevator company to come and go down into the shaft to look for it.  Well, $4000 or so (thank goodness for health insurance) qualified as expensive so they called the men out. We only had to wait about an hour after seeing the doctor before they called us with news.

The maintenance lady called the receptionist who told us that the men were downstairs and had found "pieces" of the hearing aid.  But it turned out the elevator men were able to find the BAHA and the incredibly small battery that had fallen out (that was above and beyond because I have replacement batteries). Best news, it appears to be working properly. Thanks to two FB groups I am a member of, we learned that the BAHA cane with a special piece that attaches to the BAHA that allows me to plug my ear, press it to my head and hear for the plugged ear just as Lukasz would on his no ear side (thanks, audiologist for not showing or telling me about this) AND, guess what? It comes with a safety line to clip to the shirt and BAHA so it doesn't get lost if it pops off. Again, thanks audiologist for not mentioning this to a mother of a 3 year old.

However, all is well that ends well.  And Lukasz is really hearing things like never before.  He has stopped in his path when hearing the same train he always hears.  His jaw drops and he asks where the train is.  He has always noticed the train whistle but it was far more astounding to him.  He clearly thought the train must be right upon him.  He did the same when hearing the bells from the church.  I was afraid he would resist wearing the hearing aid because it requires the head band until he has surgery to put in a permanent post but he must like the result of the aid enough because he doesn't touch the band all day except to get it in a better position.

Pumpkin Patch

There were three trips to three different pumpkin patches this year.  I took the kids to Parkhurst Pumpkin Patch, the older two boys went to another with their class and Lukasz, Padraig and I went to a little one with the Oklahoma School for the Deaf Pre-K.  Everybody got a smallish pumpkin from Parkhurst, the boys got slightly bigger ones on their field trip and with OSD I bought a 65 pound pumpkin just because I saw it and knew the kids would flip and all the proceeds were for charity.

Then for two and half weeks they begged me everyday to carve the pumpkins.

School Parties

Five school Fall parties for Mommy to go to! Four on one school day, three at the same time!  I was running from classroom to classroom to make sure they all knew I cared and came.  It's funny that as grown ups we do not really think of these school functions as that big of a deal but I could see how happy they each were when they saw me.  Lukasz had his party the Thursday before Halloween and got to co trick-or-treating in the University of Central Oklahoma's administration buildings.  All of those kids got a serious haul of goodies.

Only one semi-bad experience from the fall parties.  Lukasz went with me to P's school party and out in the hall, a parent from another class parent told Lukasz "I love it! You look great!". Here's what he was wearing (not a costume). I still can't figure out what she thought he was.  And maybe it was innocent enough but since last Halloween, I was on heightened alert for well intentioned but negative comments.  Last year Lukasz was Yoda with green face paint and a late comer to a Halloween party said to another guest, "What a cute idea, a baby zombie!"  My back was to her and I pretended not to hear her but I heard the other guest whisper to her in that 'um, not sure how to tell you this but' voice, that that was just how he was born with face paint for Yoda.  She was mortified. 

Trick-or-Treating

Two box trolls (Padraig and Lukasz), a Jedi, a storm trooper and a Thunder cheerleader.

Thank You Letter

I just found out that my letter to the Catholic Adoption Center was published in their Jubilee Bulletin- for their 20th anniversary. And I thought I would share it here, as well, even though it is kind of a recap of earlier posts to this blog:

A Thank You Letter

We owe a great debt of gratitude to the Catholic Center for the blessing of our fifth child, our fourth child through adoption and our only internationally adopted child.  Lukasz has added so much love to our family and expanded our experience of the world in many wonderful ways; from a journey to Poland to seeing life through the eyes of a child so different in amazing ways from the rest of the world.

This was an unexpected journey in many, many ways.  We never expected to adopt internationally. We never expected we would adopt a child with only one eye, one ear, half a jaw, right coronal craniosynostosis and a severe cleft lip and cleft palate.  As it turns out, we cannot predict our future and sometimes one email can change your life forever in beautiful ways that only God can foresee.

When we learned through an email from our agency about Lukasz, I asked my husband if I should inquire for more information.  He said, "It never hurts to ask."  I emailed and asked “how bad are his facial deformities?” and the agency rep said, “I am happy to send photos.”  I’ll admit that it took me a few minutes to take in all of Lukasz’ face and let it settle in.  The uncorrected cleft lip and palate were severe; the unformed right side of his face complete.  But I fell in love.

I researched his medical conditions. I reached out to support groups on and contacted craniofacial surgical teams and our family doctor for their opinions. Medical opinions ranged from, “he could be in diapers for the rest of his life” to “no big deal, he has one ear and one eye—he’ll be fine”. 

However, all the doctors agreed that he would require ongoing surgical intervention for the first eighteen years of his life and that each of those craniofacial surgeries would be medically necessary and necessarily expensive. But somehow we knew that even though the unknown was terrifying, we wanted him.

A Leap of Faith

It came down to whether we wanted to take the leap of faith into the unknown that every adoptive parent must make.  There are too many unknowns in adoption to expect a smooth ride.  You cannot expect to know even nearly everything about the birth parents or the adoptive child prior to bringing them home.

The faith you leap with can only, at best, be educated and confident that you can do what it takes to parent and love his child completely and appropriately as if God had placed him in your womb.  We took the leap.  We accepted the referral. The negative medical information and opinions just did not feel right to us.

Becoming a Family

We traveled to Poland on June 20, 2012, and met Lukasz on June 22, 2012.  His foster family’s love was immense.  We could feel their sorrow in letting him go but they were happy he would have a family. The devotion of the adoption center’s director to Lukasz was amazing.  She was at his birth, named him after her son and so desperately wanted him to have a home as quickly as possible.

On July 30, 2012, I arrived home after 6 weeks in Poland with Lukasz, our new son. He was immediately embraced by his siblings as one of their own.  They had been waiting for him for as long as we had.  Every day after the day they saw his referral pictures, they had asked, “When are we bringing our brother home?”  As much as we had loved him from the moment we heard of him, they did as well.

Lukasz is a child of joy, pure energy, stubborn determination, and was given the gift of a complete, blissful inability to recognize the stares and comments his appearance often elicits. He has an infectious charm that wins even the most wary stranger over.  He loves to copy everything his big brothers do and even lets his sister comb his hair.  He is speaking better and better everyday. In February, he had cranial vault reconstruction to reshape his skull and bring his right cheek forward.  They surgeons told us that he would be tired and in pain for several weeks but he surprised them by recovering, being able to go in three days rather than six and getting back to normal activity almost immediately.

Thank You

We know that God’s plan was for Lukasz to join our family.  The Catholic Center, the foster family, our agency, and in-country agency representative (and her family as well) truly acted as the hands and feet of Christ in bringing him home to us.

Thank you, for advocating for Lukasz and all children waiting for families.  Thank you for entrusting us with your precious child.

Adopting all of our children was a miracle.  Adopting Lukasz from Poland was a lesson in being open to whatever unexpected opportunity comes our way. We pray that other families, Polish and international, will have the courage to prayerfully accept a child into their families through adoption.

Sometimes the most unexpected are the greatest of God’s gifts

"Mommy, He's Scared of Me!"

Lukasz on Dusty at Coffee Creek Therapeutic Riding Center.
He goes with his school every other week. Can you tell he LOVES it?

We had an experience two weeks ago in which Lukasz realized for the first time that a child was crying and screaming because of his face.  We knew this time was coming but his response was nothing like any of the scenarios we had tried to anticipate.  We should have. His response was exactly in line with his troublemaker, contrary personality.

Lukasz started school on August 20 at the Oklahoma School for the Deaf regional pre-K at UCO.  His brother Padraig started pre-K at our neighborhood school on Aug. 19.  So on Thursday, I decided that since it was finally just the three of us we would go to lunch at the fast food place Padraig is always begging to go to.  INSIDE.  And play at the playground.  Usually, we just go through the drive0-thru for obvious reasons (i.e. I do not want to lose my mind eating out with five kids by myself).

The rule is we eat first then we play.  So they both ate everything as fast as they could and ran out to a very cramped indoor playground which had just enough room for two benches for parents and about a 5 foot by 5 foot floor area between the entrance to the climbing playlet and the exit of the tube slide.  There were about 6 small, pre-k and younger kids playing with 3 or 4 moms sitting at the benches.

Lukasz ran right in after Padraig, ripped off his shoes and followed him up the play tower.  There was the expected hushing of kids in the play tower when I knew they were seeing Lukasz and I heard Padraig say, "That's my brother, he just has one eye and one ear."  And later, "He was just born that way."

A three-ish year old can sliding down the slide and ran over and sat net to his mom on a bench.

I have come to a natural habit of scanning a room, assessing the number of kids and mentally preparing myself for responding to innocently curious questions, stares and the occasional terrified crying and screaming.  Everything was fine until, Lukasz came down the slide the first time.  That's when the three year old burst into terrified crying and screaming.

Lukasz ran right past him and back up into the tower.  The boy calmed down.  Lukasz came down and the screaming started again and stopped when he was out of sight.  His mom knew what the problem was too and she was very frustrated with him.  I told her that it was normal for some kids.  Lukasz looks different and some kids can't help it.  She was apologetic but I told her it didn't bother me, I know he's not trying to be hurtful.

This continued four or five times until Lukasz stopped and noticed the boy crying.  He looked at me and signed, "He's crying, mommy."  I said, "I know, honey, he's ok." Then, before I could stop him, he decided to run over and try to give him a hug.  The screaming/crying reached a new height and I ran over and pulled Lukasz away.  He looked over at the boy and went up in the tower.

This time when he came down, he got out slowly and noticed when the boy started crying.  He ran over to the tower and saw that the boy started to stop.  Then he ran towards him and he started again. Lukasz did this again and then stopped, looked at me, and smiled the biggest, crooked smile I have ever seen and said, "Mommy, he scared of me!"  He thought it was funny!

I told him he was scared because he looked different.  Lukasz responded by pointing to his eye and scar from the skin tag surgery.  He wanted to go over and make friends but the little boy was too scared.  Lukasz went back to playing.

Lukasz clearly knew what was going on and what it was about his face that made it happen but he wasn't bothered by it at all.  I hope that this is the "whatever, I think I'm pretty great" attitude we work so hard to encourage him to have about his appearance and any response it gets.  I know it's too much to ask for him to never be hurt that people respond this way sometimes but if he can avoid getting hurt half the time, we'll take it.

A sister that dresses him up in her clothes, her dolls' clothes and old baby clothes she finds in our closets (she did this to Padraig when he was 3, too).  He's such a good sport about that and enjoys getting the laughs from his family.

Another Surgery and a New School

Little House on the Prairie reproduction on the actual location; arriving at the same time a grass fire raged in the field less than 50 yards from the log cabin; putting the kids to work cleaning the house for Ma; incredible feeling of standing right where Pa and Laura stood when he dug the well; seeing Pa's fiddle in person at her house in Mansfield and so many other actual items from the stories; amazing. If you have any doubt, I definitely enjoyed it more than the kids and can't wait to go back when Millie is 10.

We have had an exciting and exhausting summer.  We sold our house, found and moved to a rent house, spent a lot of time at the pool, had another surgery, went to the Little House on the Prairie and a new school year has started.

A New House

Somehow we crammed all of our stuff into a house half the size of our last house.  We got rid of at least two U-haul truck loads of things we don't use, hadn't remembered or had out grown.  We had a 6 by 10 foot room in the basement alone that was stacked from floor to ceiling with baby stuff from 8 years of babies and a thought that we "never new when we might get another baby." Finally, decided to donate all of it with the pacification that if we adopted another baby/toddler it that we would splurge on new things.

Somehow I packed and unpacked without going totally insane.  It's smaller but the layout is so much better and we know we will be comfortable until the new house is built.

The Pool





We bought a summer membership to a local club for use of their pool and spent every moment from open to close baking in the sun, snacking, swimming and diving.  A great way for a mom of five to not go crazy with kids home all day, all summer.  Lukasz learned to paddle around the pool by himself with a special floatie that goes over the arms and under the chest.






Surgery

Home from surgery without missing a beat.

At the end of July, Lukasz had surgery to remove the skin tags on the right side of his face. As always, Dr. Kane did a great job and Lukasz recovered almost immediately after the anesthesia wore off.  I drove down with all five of the kids and our babysitter, the brave Sarah, and we stayed in a hotel the night before the surgery and the night after the surgery.  It was an outpatient surgery but Lukasz had a pre-op appointment the afternoon before the surgery and we did not know when we would be discharged from the hospital after the surgery.

The other kids were completely satisfied to swim in the pool all day while Sarah laid by the pool keeping an eye on them.  And I'll admit it was nice for me to have a few hours of quiet in the waiting room.

Lukasz woke from surgery ready to hop right back into the crazy life with his siblings and within an hour of discharge he was in the pool at the hotel with everybody else.  We were supposed to avoid the pool for two weeks but we kept his incision dry.

Body Awareness

This surgery was much more emotional than the cranial vault reconstruction in February.  I knew it would change his face.  I also knew that it was not absolutely necessary for his physical well being as his cranial vault reconstruction.  I didn't want him to think we didn't think he was beautiful.  I didn't want him to think he needed to change his face. However, we acknowledge that the reality is that we did it to make his life easier around people--so he would not be faced with repeated questions like "what's that on your face?", and maybe see a few less surprised looks.

Yes, this does sound like a surgery to conform to society; to help Lukasz "fit in". I don't mind answering the questions about his face or shielding him from the horrified face of a two year old a million times a day, so long as he never notices.  And there are things we will always get questions about and parts of his face that will never be close to normal.  His face has always been beautiful and I don't care if the world does not see that or agree, but we decided we wanted to minimize his very real pain when he does become aware of the stares and questions.

I guess this is one of those decisions that parents make everyday that we know that no matter what choice we make, our teenaged children will disagree, despise and scream about.   We are still torn and still concerned about how he will feel over this surgery and the conversations we had with Lukasz make us wonder even more.

"My Ear"

For a couple of weeks before the surgery, we explained to Lukasz in sign and speech that Dr. Kane would be cutting the tags off of his face.  We pointed and touched the area so that he would understand what part of his face would change.  We did not want him to wake up after surgery to suddenly find that part of it was missing, no matter how small.  We asked him what was going to happen and he told us by saying that "Dr. Kane cut this off" and pointing.

About a week after the surgery, I told Lukasz that we were going to see Dr. Mitchell (our ENT in Dallas) for a follow up on his tube surgery in December.  Lukasz looked at me with a scared face, touched the incision, then pointed to his good ear and said, "NO!  I don't go. Dr. cut off my ear!"  He didn't want the doctor to cut off his other ear.

I was stunned.  In Lukasz' mind, those skin tags were his right ear.  And remembering back, we always thought it was funny and cute that when he "covered his ears" he had always covered his good ear and the skin tags.  If he was putting on head phones he had always tried to put the right side over his skin tags.  Even though the skin tags were no where near the normal location for an ear.

I explained over and over that Dr. Mitchell was just going to look inside his ear and at odd times during the days leading up to the follow-up appointment I would ask him what Dr. Mitchell was going to do.  He would say, "Just look" and point to his good ear.  However, every so often for weeks he would randomly tell us, "Dr. Kane cut this.  Cut this one?" and point to his good ear.

Thankfully, he has not been permanently traumatized.  And we tease him, asking, "Is Dr. Kane mean?" He laughs and says, "Yes!  Dr. mean, cut my ear!" But now he is not afraid or sad.  And he does not mind that we are going to see Dr. Kane for his surgery follow-up appointment.

These conversations told me so much about my son.  He understood what we were telling him and could make connections between the past and future.  He had an internal body image that was fixed and changes to it could scare him.  My instinct to tell him about what would happen was right but I had no idea that Lukasz' some how biologically identified his skin tags as an ear.  In fact, they were; or would have been if his face developed properly.  I find that amazing.  I am not a biologist or doctor but to me this is fascinating.  We never told him that was an ear.  Those tags never looked like the good ear that we always pointed to and identified for him in the mirror.  How did he come to think of those as his right ear?

If nothing else, we know that it is imperative that any time he has surgery we be mindful that Lukasz is aware of all the parts of his face and how he sees them may be different than how any of us see them.

School

I know that the 2013/2014 school year is over and this is well past due, but it is important for me to share our first experience with enrolling Lukasz in a regular school.  As always, Lukasz surprises and awes me.  Why must moms worry?  And why must we always be faced with the inaccuracies of our anxieties? And why must fathers always be right when they tell us to "just relax and wait and see"?  It's infuriating when they say it and even more so when they turn out to be right.

Frog missing right eye, gift from Padraig's teachers at
OKC Zoo Nature Explorer's Pre-K

Anxieties

Since my last post, we embarked on one of the biggest and most frightening steps (for me).  Lukasz started attending "real" school. Once he turned three, he officially aged out of the SoonerStart early childhood intervention program and needed to start receiving his speech therapy, etc., through the school system.  This step has been a source of anxiety for me since before Lukasz came home. I imagined a daily gauntlet of emotional torture that I would be responsible for dropping him off to every morning.  I worked myself up into nausea on more than one occasion worrying about this.

The best possibility would be the Oklahoma School for the Deaf's extension pre-k at the University of Central Oklahoma in Edmond (where we attended the Toddler/Parent Group every Friday) but they would not have a spot for us until the 2014/2015 school year.  My next hope was that that perhaps I would be able to get Lukasz into our home neighborhood school where he is known and loved by students and staff alike. He'd have the added back-up of a gang of Kane kids to love and defend him; surrounding him as they walked down the halls, a group not to be messed with. We work very hard to instill the idea that "Kanes cannot be in any group or associate with any individuals that will not accept every other Kane".

Unfortunately, I learned that in Oklahoma City, deaf/hard of hearing children all attend a deaf education program housed within a regular elementary school.  Separate classrooms with speech therapy in groups, not individual as with the SoonerStart program.  I have issues with this program and it's implications for adequate education in the post-pre-K years but that is for another post.  

We learned that he could either attend this Deaf/HH program with a whole day of education in total communication, growing his language for hours with a half hour of group speech therapy once a week or get nothing but a half hour of group speech therapy once a week at his home school until he is old enough to attend regular pre-K and then if he can't hear and speak well enough he would go into a special education program. Of course, he would not be able to hear or speak well enough because he is hard of hearing (even medically qualified as deaf) and would not have had the intensive total communication (ASL with spoken word) for two years that he would get at the other program.  Issues with whether this "choice" complies with the IDEA are for another time.

In any event, there was not much choice. We wanted the best possibility for him so we chose the Deaf/HH program. 

Monroe Elementary School

Gregarious as always, Lukasz completely defied my worries.  He won every heart he met on the first day.  Before classes started, all the children would be sitting in a line against the wall along the hall by their classroom. Lukasz' class was at the far end of the hall. By the second day when I took him to school, he ran down the hall to shouts of "Hi, Lukasz!" and waves.  He ran as fast as he could, so excited to get to class, throwing waves randomly from side to side at the kids in the hall.  

At pick up, I pulled up to see the teaching assistant waiting with him on her lap and surrounded by 5-15 older, non-deaf/hh students talking to him.  When it was time for him to go, they all had to have hugs.

At pick-up. They see me coming.

And they have to get hugs good-bye.

I know it may be different as he gets older, but I am so happy that all those teachers and students loved Lukasz from the first minute and never made me or him feel like it was out of pity. If we are right, it maybe that Lukasz' personality wins people over and beyond his different appearance. And the added benefit beyond the positive experience?  He came home every afternoon signing things I had to look up and guess at and his speech was following along, too. Whether by speech or signing, his communication took off exponentially.

This Year

Lukasz will be attending the OSD extension pre-K at OCU this year.  And it works out really well for our family as we unexpectedly moved to Edmond in July due to an offer on our house without it going on the market.  So, I will not be driving kids to schools in different cities.

The changes and experiences of moving to an new neighborhood with Lukasz and our gaggle of five are for another post when I get another 30 minutes to type in peace. Not to mention our soon to be started adventure of building a house on our heavily wooded 6 acre plot of heaven. 

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.

Ever Consider Adopting A Child with Craniofacial Issues? Or, If Not, Maybe Pass this Info On?

If any of you have been caught up in Lukasz' charm and been inspired or if you have always thought about adopting a child with a craniofacial differences and/or hearing issues, here is a child you may want to consider;  Bode.  The agency that advocated for Lukasz and found us is now advocating for Bode. I wish we could adopt him but as my husband says "no more room in the car".  So, I will advocate instead.

But, first, "Advocate" is Not the Right Word

Everyone talks about "adovcating" for a child but I really don't think that is the correct word. "To advocate" means "to speak or write in favor of; support or urge by argument; recommend publicly".  I don't believe that is what any of us are doing. When we tell people about a particular child who has been passed over for adoption for any reason we are not arguing for them or recommending them because none of us would say "this child will fit in your family" or argue a family into adoption. Nor would we say that this child is right for every family. Every individual and family must decide for themselves whether adoption and any particular child is right for them.

Really, I think we are just spreading the word about these children.  Trying to let a broader audience know that this child is still waiting so that his/her family (the right one for him; the one that can handle and love his issues) will hear about him/her.  And when that family hears about him or her; sees that face for the first time, they will start a journey of consideration that will ultimately lead to him coming home; being claimed by the ones who belong to him.

If you know Bode is not the child for you, then pass on his information so more people will hear about him and he will get closer to his family finding him.  And spread the word about any waiting child.  It may be your voice that leads a family to their child.

So, here is the info on Bode (pass it on):

Bode is in Bulgaria and just turned two.  He has hearing loss and craniofacial differences (just like Lukasz, he got both) but is reportedly on track developmentally with his peers. It looks like a particular craniofacial syndrome that I ran across while researching Lukasz' issues, but I am not a doctor so won't guess. However, that syndrome wouldn't make me hesitate to adopt this guy if our car had more seats. Below is a video of him.  It appears he has both eyes so he's a little ahead of Lukasz in that respect and he sure looks like he has the same spunk.

If you or someone you know might be interested, email me; I'll get you to the people with more information. And I am always willing to answer any questions anyone may have about living with/managing craniofacial differences and/or adoption.  Plus, I am always open to conversations with adults. :-)

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More About Our Surgeon

Because I know how hard it is to decide on any surgeon or physician for my children and even more so on a surgeon who will be performing major craniofacial surgery, perhaps throughout my child's life, I feel it is important to offer my experiences and opinions for the benefit of other parents searching for the right surgeon.

My husband and I are driven to deep research and analytical examination in everything we do. Trust me when I say that he and I exhaustively researched physicians and it was still hard to come to a final choice.  While there are not a lot of surgeons experienced enough to handle a case like our son's, there are several very good ones.  However, we were sure we had chosen the correct doctor once we met with Dr. Kane.  But I will warn you that even if you believe you have chosen the correct doctor, it still feels like jumping off a cliff when your child is wheeled back into surgery.  You hope and pray that you have "chosen wisely" in the one aspect of your child's care that you really have any control over.  Anything can happen in a surgery under general anasthesia no matter who your surgeon is; you can only hope that that one ultimate choice you made, the doctor, is the best you could make with the information available.

For us, it turned out that we could not have chosen better. All the trips, consultations, scans and the unexpectedly long journey to this surgery, appears to have worked together to bring us to the right place. So far, Dr. Alex Kane and his Craniofacial team at Children's Medical Center Dallas fulfilled every expectation that we could have asked for in the care of any of our children. We were impressed by their personal interest in Lukasz' care.  They all seem to be genuine, good, approachable people with whom we felt welcome to discuss any issues or concerns.  Our family would recommend them to anyone seeking a craniofacial surgeon to treat their child from a minor issue up to, and including, more complicated and serious cases.  Lukasz' case is pretty involved.  If Dr. Kane can handle him, it's likely he can handle your child's issues as well.

Here is a 2011 Youtube video I found introducing Dr. Kane (starting at 3:42).  It also shows how the craniofacial team works, as well as following a child with a clift lip through treatment.  The video also follows the care of a patient in another specialty, so you'll have to keep watching to see all of the information about Dr. Kane and his team.

On the Other Side of Surgery

Matching hairdos post surgery. Still super cute (both of them!).

Lukasz did GREAT!  Well, I guess I should give the credit to his surgeon, Dr. Alex Kane, and his team.  They did a wonderful job and we could not have felt more comfortable during the entire experience.  The actual work time during the surgery was about 6.5 hours.  Someone called us with an update every hour and we met up with Lukasz in the ICU as soon as he came out.

Immediately after surgery in the ICU.
Masks/gowns/gloves until cultures came back.

Incision. Zigzag so when hair gets wet it doesn't
have an obvious horizontal part.

We were told repeatedly that he would have the wind knocked out of his sails for a week or two but Lukasz surprised everyone by waking up at 4:00 a.m. the evening after his surgery and acting his usual feisty self.  We had the hardest time keeping him in bed and from trying to pull his IVs out. He ate and drank very well right away. Dr. Kane told us to expect his head to swell to the size of a pumpkin and his good eye to swell shut, but, again, Lukasz defied all.  He did develop quite a bit of swelling (who wouldn't expect that?) but his eye never swelled shut.  And the swelling certainly didn't bother him.  He did so well, in fact, that we were allowed to come home on Sunday.  A full 3 days earlier than we expected.  I don't know how he could be so energetic and running around after such a major surgery--on his head!

By the next morning, you can see the swelling.
Here he is signing "Get in car, go home, see
grandma." We had just talked to her
 on the phone.

Sleeping.  You can see that this is the next day;
no swelling yet. Grandma made the Superman
blanket special for his hospital stay. We also had
a beautiful quilt made by a friend just for him.

Now, it is just a matter of medications and monitoring the incision.  He has had a little bit of a fever but we were told that with cranial surgeries, children usually develop a little fever a few days afterwards.  It has not kept him down and the ibuprofen usually takes the fever down. We have been in contact with the doctors and it has not been of any real concern. We will see Dr. Kane in three weeks for a follow up. In the meantime, we send photos of Lukasz' head to Dr. Kane every three days.

Watching "Pooh Bear" on the Nook.
And see the beautiful quilt?

Finally, free! Sort of.  Mini-adventure to the AMAZING train
display in Children's Medical Center. We went twice.
The 1st time, Daddy let him pull the wagon but Mommy
was more rigid about  the rules and made him ride.

We were also very lucky to have the Ronald McDonald House Dallas as a home base.  We weren't there much but it was wonderful to have a place for one of us to sleep while the other was with Lukasz.  And they had 3 home cooked meals a day provided by volunteer groups, as well as special events and plenty of things for children and there siblings to do.  If we had brought any of the other kids, they would have loved the RMHD.  All for $15/day.  If you are going to be overnight for your child's care, find out if there is a RMH and ask your doctor's office to send a referral (our office has a social worker that does this). We hated to pay for 6 nights (what we were initially expecting) in a regular hotel when we would just be there minimally and the RMH gave us much more than a bed--support in a happy atmosphere.  Nothing can substitute for a place familiar with and specializing in families caring for children undergoing stressful medical care.

My little Valentine. Dinner, the night before surgery.
One of the volunteers gave him the heart ears.
Can you tell he was pleased with himself?

The horse in front of the RHMD.