Still here, Still Good, Crazy Times!

Me and my crew at the OKC Thunder season ticket holder appreciation party.

Sleep Study No. 2

It has been far too long since I posted.  But for me that means we have had good times--mostly. We noticed right away that the tonsil/adenoidectomy had a positive affect on Lukasz' sleep. His snoring was quieter and has improved a great deal over the last few months.  The follow-up sleep study confirmed this, showing no problems with oxygen levels at all and "only" four disruptions per hour. The end result is that the jaw surgery can wait AND no need to worry about placing a tracheostomy! I do want to put a recommendation out there for OU Children's for anyone in the Oklahoma area who's child needs a sleep study. We had a different tech for this second study and he was amazing at getting all those wires on while keeping a 2 year old who doesn't like anything on his head from ripping them off. I can't remember his name but ask for a Joe who used to be a clown (seriously, he went to Ringling Bros. clown school right after high school.

Family portrait by Iain. Can you see Lukasz?

Speech Progress

Speech is still a struggle. However, he learned to say "hi" and "bye" and he is very excited about it. He will yell "hi" to you from the back of the house as you enter the front door and as he runs excitedly to see who it is. He waves and yells "bye" until he can no longer see your car. His little hand flaps in the air until it seems it would come right off.  With the amazing praise he got from learning those two little words, he has learned to say "more".  I taught him by saying "maaaaaaaa" and using my thumb and forefinger to pinch my lips together and letting go with an "r" intonation at the end. When I let go of my lips with the "r" sound, something like "more" results.  Then I did the same on his lips while saying "maaaa" and then "r" as I let go. And when we got the "more" sound doing that I was so excited, he was excited. And Lukasz is such a happy imitator that he immediately copied what I did on his own lips and after a few times, he had it! Now he says "more" all the time. Of course, he makes ducking quacking hand motion in the air facing his face every time but the speech therapist says he will definitely out grow that. 

His signing is improving as well but until yesterday he always preferred to scream and would need prompting to sign.  We are still working on not giving in to his screaming without making him sign.  He really is happy when he can communicate what he wants.  And he definitely understands everything we say, even if we do not use signs so we are reassured that his hearing in that one ear is good and that he is picking up his understanding of English.

General Terrible Two's

His brothers and sister dote on him and tend to make excuses for any of his naughty behavior (which is getting more and more terrible two-ish everyday) by saying, "Oh, he doesn't known any better, Mommy, he's just a baby."    He observed Padraig pulling Millie's hair and thought that was hilarious, so now he pulls her hair, my hair and (karma is funny) Padriag's hair.  He is so stubborn and thinks it is so funny that it seems we will never succeed.  I redirect and use timeout but I have also told the kids to sit on opposite sides of the livingroom from him when they watch TV--Lukasz is a silent attacker and comes up from behind when they least expect it.

He also enjoys pulling everything out of any drawer he can open and while I put those clothes back in (dressers are his favorite), he finds another drawer to empty so I have something to do when I am done with the last one.  This can go on ALL day if I don't abandon the idea putting clothes away and grab him to do something else.

Finally, our pantry is his preferred hiding place.  He loves to go in close the door and watch you through a crack pretending not to know where he is.  When he's bored with that, he starts emptying the pantry.

Trouble!

Some Tears are Unavoidable

We have had more incidents of comments of curiosity about Lukasz' face, as expected. None have really been mean spirited.  I have stopped noticing if anyone is giving us looks while we are out unless Matt is there and we are just curious to see if people are looking at Lukasz. Unfortunately, we do have rare moments that bring us back to the reality of how strangers see him.  A few weeks ago, for the third time since we brought him home, Lukasz made a child cry just by looking at him.  This time it was at the park. The three year old boy was hiding his facing in his mom's lap. And, of course, Lukasz is curious about everything so he kept walking up to them and the poor boy cried and cowered harder.  I didn't realize it was Lukasz making the boy upset until his mom finally told me that she was sorry but her son was afraid of Lukasz.  She did keep whispering to him that Lukasz was just a little boy but it wasn't doing any good.  I was finally able to interest Lukasz in the slide and let the poor boy recover from the shock of such a different face.  Lukasz is young enough that I just feel bad for the other child.  Poor thing, his reaction isn't from a mean heart, just from shock and being sad that Lukasz looks so different.

It will be entirely different when Lukasz is old enough to understand that people are crying or afraid because of his face.  I wonder all the time how he might react, what he will think and how he will feel.  He could be sad or he may take it all in stride like we do.  I hope so.  I hope that giving positive language to the way he looks to people who ask and responding with grace to those that react badly as he grows will give him strong self-esteem and a model for behavior--really, armor for his emotions.  But I know it will be hard and pray and think about all the time that he handles these situations with a strong sense of who he is and how much his is valued and that we are able to handle it in a way that helps him sift through his feelings positively. Any ideas are welcome!  Please, comment or contact me.  We are always open to advice.

The Purple Horse

As a family, we don't see what everyone else sees.  We are used to that gorgeous little face and really don't even think it looks bad at all.  Just adorable.  However, honestly, I remember when we first met him and it was a shock, despite all the pictures we had see; I can't even think of today why it was a shock, I think Lukasz looks so cute. Once we looked into his eye and he looked back, it was hard to see anything else.  I am only reminded when we really look at his face in a mirror--the first time was when he was sitting on his daddy's lap while he shaved.  

I try to understand the strong reactions (even those polite stares) to his face with an explanation beyond just our blinding love.  In my observation, we don't notice things we are used to, beautiful faces or different faces. In a sense, we take for granted how the people in our lives look.  But when we meet someone new we tend to explore that new face on the way to his/her eyes and then, as humans, we tend to always look into those eyes whenever we see that person. We may have passing notice of clothes, make-up etc., but we are so used to the shape of the face that we take it for granted as we naturally limit our conversational glances to their eyes.  How often do we really "see" the faces of people as we talk to them. If you try to look away from their eyes and all about their face as they talk it's just plain a little weird.

It is difficult to see in photos but Lukasz face is very pulled back on his right side so with the missing eye and undeveloped ear tissue on his cheek, his face is very asymmetrical.  When we look in the mirror and it flips Lukasz' face, we are forced to see his face in different perspective that we never normally would.  His differences are on the opposite side and we truly see them because they are not usually there.  As humans, as a family, we naturally look into his eye and everything else is just his adorable self.  In the mirror, we see what everyone else naturally sees when they meet him for the same time. We see the disproportion.  Of course, for us we really love him and still think he's adorable.  The only service this experience provides us is an understanding of his differences as seen by others.  And sometimes, Matt and I talk about whether and/or when Lukasz needs surgery.  Sometimes we talk about how cute he is and maybe we don't need to do any surgery.  Being able to truly see his disproportion and the way his skull and face continue to grow more and more disproportionate helps us to remember that he does need surgery for both his health and his appearance.

I guess my point is that when you have a child who looks different, that you love deeply and believe is beautiful, it is important to try to understand the people who may inadvertently hurt you or your child's feelings by their reaction.  They are only human and their brains have to process and get used to what they are seeing.  Once they do, they will see the cuteness in your kid, too--or at least that your child IS just a little child not deserving of reproach for his/her appearance.

A purple horse will get stared at. Who see's a purple horse everyday?  Imagine if you were at the park and someone walked up leading a bright purple horse.  Wouldn't you stare?  At least for that brief second while your mind tries to rectify "purple" with "horse"? Anyone lucky enough to own a purple horse has to expect people are going to stare and ask about it. Some will be afraid of that purple horse, like it dropped from outer space to wreak doom on the Earth; some will think it is absolutely the most amazingly wonderful thing they have ever seen--a miracle of nature.  Either way, they will wonder everything they can about that purple horse (where did you get it? what made it purple?) and some, especially kids, will want to look closely at it, walking all around it.  But most will be afraid to even ask.  If you want what's best for the purple horse, you should invite people to ask, otherwise that horse is going to be alone forever and stared at by the same people that see it everyday.

With questions answered and feeling welcome to approach, the future reaction to the purple horse in the park will simply be, "Oh, there's that old purple horse again."  Familiarity and quenched curiosity are what allow notoriety to grow into anonymity. 

Unless they're jerks.  But that's another story.