It's National Adoption Month: Let's Engage ALL Prospective Adoptive Parents

There are people other than Christians we should also be inviting to adopt. 

First, in full disclosure, I am a woman of faith.  I am a practicing Catholic.  My Christian beliefs are very important to me.  I do my best to raise my children with Christ at their heart with the focus on caring for the poor, disenfranchised, abandoned and ostracized by society.  I try to teach my children to be inviting and inclusive of all people of every faith and lifestyle.  There is no one unworthy of our friendship and kindness. Basically, to be known as Christians by our love as the hymn goes – to do as Jesus would do, even when others might not.  Of course, I am not perfect.  I judge when I shouldn’t, I turn my back when I shouldn’t.  But we are all works in progress and I teach my kids that, too.

However, when adoption is the topic, I do not discuss the Bible or my Faith, I do not put Christian themed adoption bumper stickers on my car, I do not put Bible quotes on the home page of my blog and I do not wear t-shirts with adoption themed Bible quotes.  These things only appeal to other Christians; they limit the “adoption option” discussion to Christians. I want people to approach me about adoption. And if they think I am a going to try to convert them or "save" them they are not going to approach me.  Or worse, they may think that I would be opposed to their interest if they are not Christian.

I do not have a problem with other people singing adoption’s praises through the music of their faith.  I, personally, just prefer to take a broader approach. I don’t want to close someone’s mind to adoption by evangelizing when I talk about it.  I believe that other adults have most certainly formed their spiritual opinions prior to meeting me or reading my blog. Blasting them with religious rhetoric is not going to serve a meaningful purpose.  I have always intended my blog as a broad invitation to all legally eligible persons to consider adoption; an invitation through the experience of our story of adoption and the continued life after the papers are final.

The reality is that when you start talking about “my Lord’s Word”, “His will”, “the Holy Spirit,” mentioning Christ, etc., or quoting the Bible, many perfectly good people/potential adoptive parents close their ears and turn away from the discussion.  They do not want to hear about a God they don’t believe in or a religion they disagree with or one they feel excludes them.  

And, when it comes to adoption, that’s okay.  I’m out to get these kids in healthy, stable, loving homes and I will be inviting, encouraging and inclusive of anyone I can get interested.  I do not need to discuss my faith or the Bible to explain how awesome adoption is and how it has given my family so much joy.  I do not need to discuss my faith to describe the kids or the conditions of so many kids still waiting out there to be claimed by a family or to explain the process of adoption.  I do not need to agree with the faith, life choices, etc., of the people I am talking to about adoption.  Nor do I need to agree with the faith, life choices, etc. of the people I am talking to in order to recognize that they will still make loving, stable parents.

There is a Worldwide Crisis of Orphaned & Waiting Children and it is a Matter of Life and Death

The number of children waiting in orphanages worldwide and in the US foster care system varies to some degree from source to source but the numbers are identical in one sense--they are staggering.   There are so many orphans, so many waiting children, so many children considered “too old” to be adoptable, so many 5 year olds that weigh only 10 pounds due to neglect, so many children that age-out into a life of no options but terrible options, so many children with facial differences and other perceived “unadoptable” conditions that, quite frankly, I really don’t care what religion, lifestyle or philosophy a parent adheres to, if they have the love and desire in their heart to adopt one of these children who would otherwise never know a parent’s love.  To see a sample of the children I am referring to go to www.reecesrainbow.com, www.rainbowkids.com or www.adoptuskids.org and browse around their waiting child pages.

Of course, I think that if you are Christian there are many Biblical and faith-based directives to consider adoption. When I am talking to other Christians, I discuss my faith. However, ultimately, I do not believe that you should or need to adopt a child out of obligation or obedience to any faith. I think that perhaps a successful and happy adoption can begin with consideration of adoption as an obligation to faith but the final decision should be whether you want another child(ren), believe that you can love that child(ren) as if he/she/they were your biological child(ren) and can provide the care that the child(ren) needs physically and emotionally. And these considerations/decisions can be made by anyone of any faith or no faith or of a lifestyle different from ours. 

I do believe that God wants us to adopt children in need, but I have a real problem when Christians discuss adoption in terms of “laying up treasures in heaven.”  Adoption is not about making a sacrifice for a later reward, it is a reward in and of itself.  It is about expanding a family, about more love to share between parents, the adopted child and siblings.  Thinking in terms of goodwill from the Almighty suggests that adoption is a burden or undertaking done for an ulterior purpose.  This just isn’t the basis of a healthy parent-child relationship. Besides, treasures in heaven should be a consequence, not a motivation. And in my opinion, a "witness" should not need to be declared.

For Practical Reasons, For Life and Death Reasons, Adoption Should be Free from Proselytizing  

As Christians, we can have a whole other discussion about conversion (or “saving” in non-Catholic terms), the obligation to evangelize, and, of course, that dirty phrase “being politically correct.” I could point out that if your concern is that these children will not find Christ if adopted by a non-Christian family, children can be converted from a non-Christian home but they can’t be converted if they are dead; if they did not survive the neglect, abuse or isolation of an orphanage or the misery of waiting for a family in the instability of multiple foster homes.

But, truthfully, I don’t really care about these proselytizing issues when it comes to these kids.  I am more practical than wanting to debate that.  The immediate problem is these kids living a kind of hell (I’m using a colloquialism here, not a faith term), at best with no family of any kind, at worst extreme neglect and isolation.  No permanency of love.  No hope for better in life.  No hugs from someone they can say belongs to them; because our kids don’t belong to us, we belong to them.

Draw in People of other Beliefs

I can only imagine how many more children would find good homes if we, Christian adoptive parents, would for the sake of these children, be inclusive of all people in our discussions of adoption; if we were mindful of forming the discussion to draw people of different beliefs in, instead of away.

I am more than willing to hold my tongue on religious issues to get these kids in homes. I just want PEOPLE, ANY PEOPLE who can pass a homestudy and love a child to adopt.  I’ll say it again, I want EVERYONE regardless of faith, lifestyle, etc. to consider adoption.

If that was not clear enough, I will just lay it out here for you, in no particular order:

Yes, I think that singles can give a truly loving, healthy and fulfilled home to an adoptive child.

Yes, I think that same sex couples can give a truly loving, healthy and fulfilled home to an adoptive child.

Yes, I think atheists can give a truly loving, healthy and fulfilled life to an adoptive child.

Yes, I think every religion out there, despite any theological or philosophical disagreement I may or may not have with them, produces some pretty amazing and loving parents.

Who Would Say a Child is Better off Dead than in a Non-Christian Home?

I cannot imagine a Christian saying a child in an orphanage confined to a crib, never being held, or any child with untreated medical conditions because he is deemed unworthy of the expense or any waiting child hoping for a family of his own is better off where they are than in the arms of a loving, gay couple and/or an atheist family.  Well, I take that back, I can imagine it and it makes me more than sad.

Observations on Life with Lukasz and the People who Meet Him

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

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

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

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

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

2.  You Get to Feel Like a Celebrity

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

Here are just a few of our's:

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

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

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

3.  Everybody Knows You

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

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

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

Chocolate milk mustache. Him, not me.

4.   You Are Constantly Receiving Prayers

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

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

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

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

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

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

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

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

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

7.  People Usually Cut You Some Slack

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

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

8.  You Get to See the Best in People

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

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

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

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

Advocating for Beautiful 5 year old Girl with Uncorrected Cleft Lip and Palate

The agency who blessed us with our little whirlwind of energy, adventure and plain fun is advocating for this darling girl.  For some reason, she did not recieve corrective surgery for cleft lip and palate.  I cannot imagine how different Lukasz would be today if he had not had palate correction at 9 months.  

When I look at this little girl her face reminds me so much of Lukasz' baby face; the face we fell in love with before his adoption director located a physician who was willing to do his surgery.  It gave him the ability to eat and drink a little more normally.  His other issues still interfered but how malnourished he would have been.  Without corrective surgery, they could find no foster family willing to care for him and even after they could not find one until he was 15 months old--one month before we brought him home.  

If you, or someone you know, is interested in giving this child he gift of a family as well as the gift of improved health care, please contact me and I will put you in touch with the agency.  Here is what they have to say about her (they likely can give you more information upon request):

Agency's Description

GENTRIE, female, DOB 2/2010 SN unrepaired cleft lip/palate, anemia. Special Focus Designation

Gentrie has the daily struggle of getting enough nourishment through food that she can eat with the challenge of her cleft lip and open palate. How much she would have benefitted from surgery as a baby!! But, that was not done for her and she has found a way to accommodate. Her special need likely affects multiple parts of her life, such as affecting her speech and her ability to be understood by staff and peers, nutrition, self confidence. MAJOR life changes could be made for her and need to be! Video has been requested and will be posted as soon as it is received.

Gentrie’s caregivers share, “She has good self-management, pleased to do what she can, can help nurturers manage the stuff.
Personality and hobbies: introverted, quiet, timid, some cognitive ability, can express her needs with simple language, can get along well with other kids, can do the interactive games; have basic ability of speaking and listening, can focus on the study.”

The State of Lukasz' Head

The Kane crew at the zoo.

This is the second post in 5 days.  Earth shattering speed here but I have to do it while I am motivated and have thoughts in my head—they so often flit in and out before I can catch them.

First, I want to correct any mistake the somber tone of my last post may created.  I realize now that it sounds as if those moments of battling negative reactions occur all day, everyday and that they are a constant pain like a bruised rib when you breathe too deeply.  The truth is that once those incidents happen; once they strike their glancing blow, they fall away.  I do not think of them again unless Lukasz mentions them (which is rare) or I am filling my husband in on the day.  I do not lie in bed at night turning these moments over in my head.

While many things annoy me, get under my skin, so many things, like these are easy for me to dismiss.  Life goes on and I prefer that it go on without negativity.  I don’t have to work at it or try; it just rolls away.  I accept that people are not intending to hurt us and children are goofy and only a product of their parents’ inability to handle uncomfortable situations.

Why carry other people’s stuff when my family, our friends, our doctors are able to carry on with a healthy smile and a good laugh?

Last week Lukasz’ surgeon mentioned that I had told him children are sometimes scared of Lukasz.  I remember having to reach deep into my dusty and cluttered mind to figure out what he was talking about.  Of course, I remembered, how could I have forgotten?  I know how.  Life went on.  Our days are filled with more joy, more adventure and new, interesting people and things.  The glad things push out the useless things.

  

And now for the happier news, as of September 2, there are no surgeries anticipated for another year!

The State of Lukasz’ Head

His head is good! In March, Lukasz had a CT scan and an appointment with Dr. Kane to follow up on his February 2014 cranial vault reconstruction.  The right side of his head had not hardened as expected so last week’s appointment was a follow-up to the follow up to see if it had improved.  Some improvement, but not as much as they would like.  None of Lukasz’ doctors were overly concerned, however. They told us they would need to place more bone on that side but that surgery could be done at any time.

His father and I had discussed the possibility of surgery before the appointment and decided that unless the doctors felt surgery was necessary immediately, we would wait.  Lukasz seems fine to us; why do one surgery when he is likely to need several more soon enough?  The doctors seemed to think that was reasonable.

It was decided that we would follow up in a year and decide on that surgery as well as the other procedures that are likely in store for Lukasz as he reaches 6 years old.  In the meantime, the focus is on his speech.  The speech pathologist has us coming in for a palate evaluation in October to watch how his palate is involved in his speech.  I apologize, my understanding is limited of what this procedure exactly is but it sounds very helpful.  Lukasz still has a great deal of difficulty making several speech sounds.  When he speaks in longer and longer sentences or full-on stories he finds personally hilarious, we often do not understand a word.  He often skips signs and goes so fast that his signs are not clearly formed.  I’d very much like to know what this little mischievous elf finds so funny about his day and I would like to see his frustration at not being understood disappear.

Next year, Lukasz will have surgery to close an opening that is reforming in his soft palate due to his growth.  I am not clear on everything else that is in the plans for the next year or so.  But Dr. Kane did tell us Lukasz would get a new ear.  More later on Lukasz’ refusal to accept that he can have two ears but not two eyes.  He both loves and hates Dr. Kane respectively.

During the entire appointment, Lukasz was taking some fantastic photos of the team.  So much joy in those people.  Wish I could post but I don’t post photos of non-family without permission.

Fun Fact: Third Row Seats are Popular to Dallas Thieves 

Our car was broken into the night before our appointment.  Just another unexpected adventure.  Nothing stolen but we learned an obscure fact about Dallas, so it was all good.

We stayed in a pretty nice hotel just down the highway from the clinic but the parking lot was a narrow strip between the hotel and the highway.  We went down to leave 15 minutes before the appointment--the back hatch had been forced open, the car seat had been tossed, and the fourth row seats had been partly pulled out.

The hotel manager asked what kind of car I had and then if they had taken the third row seats.  I told him it looked like they tried.  Apparently, third row Escalade seats are poplar with thieves. They didn’t expect the unwanted fourth row seats that Matt put in before our epic ten day road trip, though.  Even we can’t get them out with two people and a couple of hours.

Lukasz at School and Unique Worries

We have a crazy life.  There is no question of that.  So I do not get to post as often as I want.  I will not feign guilt over it or regret.  I am simply too tired from all the excitement around here.  I am blessed to have a support system to talk to when negative experiences tiptoe into our lives so the need to vent in a blog is not there, either.  A new year, new schools, building a house, my husband's academic pursuits (including editing a book, writing book chapters and his new full-time position as a visiting law professor on top of his full-time practice), and a big family trip all filtered through the unique lens of life with Lukasz warrants an update.  I'll just start with the new school year for now.

All the kids are back in school. Lukasz returned to the Oklahoma School for the Deaf Edmond Regional Preschool at the University of Central Oklahoma in the mornings but now also attends the UCO Child Study Center typical preschool in the afternoons.  He has thrived in both over the last few weeks.  This is hopeful for the coming year when he is old enough for Kindergarten.  The plan is that he attend a typical class in the same elementary school as his siblings.  

The new preschool is an exploration of many things to come.  His academic and social function, and the response of his peers to his appearance in a school setting.  We have always been confident of Lukasz' intelligence and he has confirmed that over and over again.  But he does have a problem recognizing (acknowledging) the social cues of children who do not want to play or be hugged.  He tends to hug people whether they like it or not and the more they object the longer he holds on.  I think he believes there must be a mistake; no one would reject his affection so if he holds on long enough they will come around.  Thankfully, this too has been improving. 

My biggest concern is and always has been that there might be a child in his class that cannot get past his appearance and responds with fixation, fear and inconsolable crying or cruelty; all of which are hurtful.  And all of which we have experienced.

When Padraig was in pre-k, Lukasz and I would drop him off and pick him up together.  There were two boys in the neighboring class that would react with hysterical crying and screaming everyday, until we left the building.  One would turn and face the wall so he could not see Lukasz and scream until we were gone.  The other would run to his mother crying and hiding his face.  This went on twice a day, everyday, through both semesters.  I cannot express how hurt and angered I was that their mothers did nothing to try to limit how long they were allowed to respond this way.  Luckily, Lukasz was too young to be aware of their behavior.

This summer, at the pool we are members of, a little girl started coming to the pool who was absolutely terrified of Lukasz' face.  The first day she came to the pool, she acted frightened but I thought it was the typical adjustment period.  Lots of kids are afraid or wary of Lukasz for a few minutes but once they get a chance to look at his face for a few minutes behind their mom or dad they are fine.  The next day she came, Lukasz was jumping off the diving board with his brothers at the "deep pool."  I was watching Millie in the lap pool when I heard a familiar and stereotypical blood curdling scream.  The scream of a child who is terrified of Lukasz. I know that scream.  I have heard it countless times.  But I thought, "Maybe it's not that, maybe someone is hurt," and ran to the pool.

Her father was in the pool with her and shielding her from Lukasz and I asked, "Is she ok? Did Lukasz do something?" He did not respond so I looked at the older gentleman who is always laying by the pool.  He shook his head adamantly and said, "No, no, no" and gave me the "look".  The "look" of equal parts, "that child is reacting unnecessarily to your son and I am so sorry that your son is going to have to deal with that at times for the rest of his life."  The child continued to scream as long as Lukasz stood there and her father looked at me and said, "It must be because he pushed her when they were in the pool the other day."

Livid. Livid. Not that the little girl was scared and screaming.  She was two or three years old; she could not control how she felt.  It is our job as parents to teach our children how to control and understand what they feel.  I was livid, and am now remembering, that he placed the blame for her reaction on Lukasz.  Lukasz would never push anyone. I watch him constantly when little children are around him because I know they can be scared of him.  And, her scream was not the scream of a child who was pushed days ago, it was the scream of a child who was seeing a monster.  She screamed for the rest of the afternoon whenever she saw Lukasz.  Her father did nothing to try to limit her or tell her that Lukasz was just a boy.  Instead he told her that Lukasz would not push her again, which would not console a child who is screaming because she sees a monster.

I spent the rest of the afternoon making sure that Lukasz and I moved to the opposite of whatever pool the little girl decided to play in so that she would not look at him and scream. And seething inside.

Lukasz cannot help the way he looks or how people respond to him, but that father made it his fault that  a little girl was terrified of him.  She continued in her unfettered terror all summer and there was nothing we could do but avoid her or go home early.  Which we did sometimes.  I did my best to make sure Lukasz never realized that she was screaming because of they way he looks. But I can't do that at school.

It is ok to be shocked at seeing Lukasz for the first few times but it is unacceptable to treat him like a monster indefinitely.  Even 4 year olds need to learn that. His looks are not his fault; he cannot control how he was born. Children can learn to get past or control their negative responses. Lukasz is old enough now to know that their tears are because of him.

Thankfully, Lukasz has only experienced the usually temporary wariness at his new school.  He is now friends with everyone and any hurt feelings are caused by the typical toddler disagreements.  I wrote a letter to the teachers about how to answer questions and what Lukasz' hemifacial microsoma involves but they didn't need it.

We have had other negative encounters this summer: the kids at the park decided to play tag and suggested Lukasz be "the monster"; a ten year old boy at the field where Iain and Learned were having soccer practice told Lukasz he was "creeping him out" and "freaky"; the brother of a child at OSD told Lukasz he was creepy.

These experiences have become increasingly more common. As I told the craniofacial team last week, it is like watching the tide come in.  I know that as he ages, becomes more social and noticed by more people, he will see more people pulling away from him; more eyes avoiding his face.  He is old enough to notice because he is old enough to ask why he only has one eye and one ear.  So far, I think his "self appreciation" vastly surpasses his ability to accept that anyone could possibly not adore him.  But as that tide comes in, as the waves grow and strengthen, there will be times his feet are knocked out from under him and I hope I am there to help him up until he is strong enough to stand firmly and confidently on his own.