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?

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.

The Big Surgery is Approaching

It’s been a long time since the last post.  We’ve changed doctors, Lukasz has grown, his speech is getting better, his signing is even better than that and we have just been living our crazy life.  But there are big things in store for the littlest Kane in the next few weeks and months. Cranial surgery, a possible BAHA, and starting school.  Here is a quick overview of what will be happening over the next few weeks.

One week from today, Lukasz and I will be driving to Dallas for his post-laryngomalacia, adenoidectomy and ear tube surgery appointment and his pre-op appointment for his long awaited cranial vault surgery on February 13.  We are not superstitious people but I have always taken the “never hurts to be careful” attitude, so having this surgery on a “13” still makes me nervous.

Long Time Coming

Anyone who has followed this blog or knows me in person, might be surprised to learn that we changed surgeons.  We were fully expecting to use Dr. Fearon.  We have heard only good things about his skill.  However, he is on no insurance plan.  Our insurance is very good and we do have significant out of network coverage (comparatively speaking, that is) but we could not get our insurance company to give us even a general estimate of what our out-of-pocket expenses would be.  Nor did we get much help from the Dr.’s office.  They wanted to help but for some reason they could never give us all of the necessary billing codes to pass on to the insurance company and they repeatedly told us something along “that everything typically works itself out” after the surgery.  With a $70-150,000 surgery, we really need to know what our costs will be.  We have 5 children and this is not the only surgery Lukasz will need over the course of his childhood.

In addition to the billing issues, we only ever saw Dr. Fearon.  There was no feeling of having an entire, coordinated craniofacial team working with us for a long-term treatment plan for Lukasz.  Everything was piece meal; we saw random specialists in OKC suggested by one different doctor ater another and they would send us to others and none worked with Dr. Fearon for a cohesive plan. I knew we were missing something, it didn’t feel right that I had to explain to each successive specialist what exactly the other specialists were doing or suggesting and then he/she had to try to independently base his/her treatment on what I told them the other physicians were doing/planning.  At least, that’s what if felt like.  Plus, every family who has a child like Lukasz with whom I have connected has discussed their coordinated “team” and that they would often see the members of their team in the same place at the same time and, therefore, they had an idea of what surgeries would be necessary and at what time down the road from the particular physician who specializes in that treatment.

Even with the lack of a team feeling, we liked Dr. Fearon and would likely have stayed with him had we not had so many issues with finding out what this first surgery with him would actually cost us. With no idea what our costs would be, I went back to researching craniofacial surgeons and teams.  However, it was my husband who located and found Dr. Alex Kane (no relation) at UT Southwestern/Children’s Medical Center in Dallas.  He was listed on several of the associations that recommend craniofacial teams.

My husband emailed Dr. Kane photos of Lukasz and discussed his issues.  We quickly had an appointment with a neurosurgeon and a consultation appointment scheduled.  I drove down with Lukasz for what I thought would be a short consultation appointment.  The end result was that we really like Dr. Kane and feel very comfortable with him.

A Craniofacial Team

We met with the neurosurgeon the day before the consultation with Dr. Kane.  He informed us that he did not see signs of intracranial pressure and that while we should do an cranial vault surgery to give Lukasz’ brain room to grow and prevent any pressure, we should not feel like it needed to be done immediately.  This confirmed other opinions we had received from other cranial surgeons but we had never spoken to a neurosurgeon (whose business is the brain).  We were relieved because one cranial surgeon had mad us feel as if surgery needed to happen immediately. 

The next day we went to see Dr. Kane. However, when we checked in, I was informed that we were there for a team appointment.  Pleasant surprise.  One after another group of physicians from several different fields came in to examine Lukasz.  There was even a psychologist to discuss any existing and possible psychological issues he might experience due to his appearance.  Only the opthamalogical surgeon and the otolarynologist were unavailable.

Dr. Kane had printed a 3D model of Lukasz’ skull from his CT Scan.  After meeting with all of the doctors, Dr. Kane came in again and we conference called my husband.  We discussed plans for surgery and what his future treatment might look like.  He wanted us to have appointments with the ear nose and throat doctor and opthamologist to assess the existing sleep apnea and hearing issues and to assess whether an eye prosthetic would be possible (not of vital concern to us) before we scheduled cranial surgery.

Appointments with Dr. Mitchell, the ear nose and throat doctor, resulted in another sleep study, a throat scope in the office and eventually, laryngealmalcia, adenoid and ear tube surgery.  The opthamologist concluded that surgery to create an orbit and functioning eyelid would not be possible and therefore an eye prosthesis globe would not be possible.  He said one of the options would be a prosthesis that rests on the face with an eye and lid painted on.  The eye would not blink.  When Lukasz is older he can decide on that, but for us we think an eye patch would look better (and be much cooler) than an painted on eye that doesn’t blink.

The Big One

After the surgery on his larynx, etc., we had another appointment with Dr. Kane. The original plan was to do cuts in the skull and install distraction tools to reshape the head.  I would have to turn a screw every day for 6 weeks and then he would continue to wear the device for another 6 weeks.  All while trying to keep my VERY “full of life” boys from wrestling, rolling around and otherwise roughhousing.

However, after continued thoughts and consideration by Dr. Kane, it was recently decided that we pursue a more traditional cranial vault surgery in which the skull is cut into pieces and moved and then thin cuts from other parts of the skull are put in the open spaces that are created along with some dissolving plates.  At least, this is my lay understanding of what will happen.  I trust Dr. Kane and his team know what they are doing.  The surgery can take from 5 to 10 hours or more which does not include the preparation/going under anesthesia time and post-op wake-up/recovery time.  So, a good, full day of worry for Mommy and Daddy and hard, stressful work for the surgeons.

Here is what the cuts will look like:

Yes, his tiny, little right cheek bone will be moved forward, too.

If everything goes perfectly, Lukasz will be in the hospital for 5-7 days.  Until our conference call with Dr. Kane last Friday, I was worried but not overly upset by what Lukasz will have to go through.  I mean, I don’t want him to be in pain but this is necessary.  So, I would feel bad for his pain but not too upset about the situation that he must endure it.  Until Dr. Kane told us that he will look normal after the surgery for the first day, then his head will swell to the size of a pumpkin and his eye will be swollen shut. f everything goes allright, it will start to come down after three days.  And another 2 or 3 daysuntil he can see.  Because he only has one eye, he will stay in the hospital until he has most of his vision back. 

I just assumed he’d look like himself the whole time; that he would wake up like he did from his other surgeries and just be in the hospital for 5-7 days so his head could “set,” for lack of a better term--playing on the ipad, watching tv, and coloring. I didn’t imagine having to see him looking like that and unable to see his mommy and daddy or color or watch tv.