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.