Medical Update

The Big Texan on our way
from Las Cruces, NM.

Lukasz’ palate revision last month went well. He was excited to have two therapy dogs visit him. His speech therapists immediately saw improvement in his speech, which was the goal. Of course, these improvements are only noticeable by his family, close friends and therapists but we are hopeful that practice will make his speech more intelligible to the general public.

The more concerning update is the result of his sleep study in January. Last week, Dr. Mitchell, Lukasz’s ENT told us that Lukasz stops breathing 13 – 15 times an hour.  Severe sleep apnea.  We knew he had some apnea because he always snores and it is clear he struggles to breath. Lately, we have noticed that he sleeps longer than he used to and wakes up less energized. Not to mention the ongoing issue we have with Lukasz’ weight. He just can’t get above 32 pounds. Dr. Mitchell stressed that his weight issues could be related to his sleep apnea. Apnea of 13 to 15 times and hour demonstrates a great deal of effort being used by his body at night.

It never occurred to us but Dr. Mitchell told us it is not uncommon for children with craniofacial differences like Lukasz’ often develop sleep apnea as they age because of crowding.  The right side of Lukasz’ face and inner anatomy will not grow so his airway starts getting smaller and smaller. He showed me the back of Lukasz’ throat and I was shocked to see how tiny the opening to his throat has become. Much smaller than I remember.  If it is so small now, how much smaller will it get as he gets older?  I forgot to ask.

I looked in his mouth every day during his recovery from his palate revision but never paid any attention to his airway, just his incision.

Dr. Mitchell told us we had three options to improve his apnea:

1.     CPAP. This is what we anticipated would be prescribed before the appointment.  Lukasz’ dad has one and my dad has one so we know how much they can help. Dr. Mitchell the best option to start with. 

2.     Remove part of his tongue at the back of his mouth. They would do an MRI of the tongue to find out how much they could take or if they could take any at all.

3.     Tracheotomy.  I really do not want to see that happen to Lukasz. I know a lot of kids with Lukasz’ constellation of issues have had one since infancy but it would just hurt me to see him get one at 5 years old when he is aware and would have to adjust to having it. If he’d had one since he was a baby, it would be a part of him he was used to and he would not remember a time without it.  But if it comes to this, we will, of course, do what is necessary for his continued growth and brain development.

So, we are starting with a CPAP. Dr. Mitchell is optimistic that it will work for Lukasz. And we are hopeful, too. 

The Fragility of Forming Childhood Memories

Stop off at Roswell, NM, on our way to Las Cruces for mom's
30K and to meet our house designers.

We spend more time thinking about our childhood than we spent actually living it. Our childhood is the touchstone to which we always return; to understand ourselves; to rationalize ourselves; to place blame; but ultimately in the simple pursuit of healing, even if all we do is rehash childhood pains and wrongs and remember things that we did not even notice at the time.

Of course, this self-examination is not always initiated consciously. So many sensory memories are deeply embedded. A smell, a song, a fabric pattern, a color, is enough to vividly, and often involuntarily replay a memory on the mind’s movie screen.

If we are lucky, we look back and find mostly happy memories with a few sad moments and even fewer truly traumatic ones.

Maybe our childhoods loom over our adulthoods because we start life with big eyes, trying to take in everything we can of a world so much bigger than us. We are more open to all that the world is and, therefore, the world affects us most in those years and stays with us longer than later experiences.

Sometimes those of us with good childhoods forget that the touchstone others possess is more pain and chaos than laughter and wisdom. I worry about the ups and downs of Lukasz’ childhood memories in the making. Everything I can control is the focus of my best efforts to give him the best of memories. However, the experiences he has out in the world is, for the most part, out of my control. This is the case for all parents. But most parents do not worry about their child walking through the world as visual oddity that minds must adjust to and worry about those minds that do not adjust and accept.

A Catalog of Kindness and Oblivious Cruelty

At the beginning of February, Lukasz had surgery to revise the muscles in his palate. We drove to Dallas, spent the night at a hotel, had surgery the next day and drove home the day after.

The Starbucks we always stop at on the way gave him a free cake pop, “because he’s so cute and is going to have surgery” (Lukasz tells everyone he meets about any upcoming surgery and that he “is going to see Dr. Kane”). The hotel desk clerk let him pick out a free candy from the hotel store because his birthday was coming up. The same Starbucks clerk remembered him on our way back and gave him a free hot chocolate and told us that she had thought about him all day on the day of his surgery and told her husband about him.  A week later, Matt took Lukasz and his two older brothers to Chelino’s, a local Mexican food restaurant, and an anonymous fellow patron sent him a gift card.

In Contrast:

Lukasz ran off in the Science Museum. Learned found him trying to pull himself up far enough to get his face in the opening of an astronaut photo cut out. He was completely oblivious to a set of grandparents and parents huddled around a stroller trying to calm a little girl who was screaming and crying in terror at the sight of him.

I had had a vague awareness of a screaming child as I ran all over looking for Lukasz. When Learned called me over, I sarcastically thought, “Of course, silly me, why didn’t I immediately look where there was a screaming child?” 

And then I stopped where I stood. Overpowered by the realization that this could be Lukasz’ life, leaving a string of screaming children behind him.  But eventually he would see it and know it. How hard would it be to be a kind and loving adult who makes children cry when they see him?  It would break his heart.

The mother was so apologetic and she and her parents were trying to get her to engage with Lukasz. I have no complaints of their response. But I was in that moment for some reason, for the first time, overcome by inexplicable fear and sorrow for Lukasz.  The adult Lukasz, looking back on his childhood as we all do. Spending more time than we should on it.

The next Sunday, I went to the YMCA for my usual Sunday night class and as usual took Lukasz to Child Watch. A 4 year old girl was standing with the intake girl, hugging her leg and burst into tears when she saw Lukasz. She looked up at the worker and said, "I don't like the boy with one eye." The staff member tried telling her “he is fine, he’s here all the time, it’s ok,” but then her older brother said, "Don't worry, remember? Mom and Dad made a deal that if he was here they'd cone and get us." As my jaw dropped, Lukasz ran off to check out the big guys playing basketball. I quickly ran after him and when I brought him back, sure enough, the mom and dad were carrying the girl out in tears with brother behind.

Really? This gorgeous kid
makes kids cry? I still
can't wrap my mind around it.

The mom said to me, "I'm so sorry." And I think, "Don't apologize to me, apologize to your daughter who is going to think it's OK to be afraid of people who are different and to avoid them and anything in life that makes her uncomfortable." I was so angry. That fear is contagious. One kid in a class allowed to act like that and soon one or two others who weren't sure how to react join in. Plus, I'm NOT ever giving up my workouts because your kid doesn't like how my kid was born; my kid already understands your kid's reaction is weird and automatically dismisses it (for now). And it made me think about kindergarten next year. If there's a kid that some parent decides will be "too traumatized" being in Lukasz' class, how am I going to keep from going red rage, ape s@*t, bat crazy on them!?

I guess, the same thing that always keeps me from going insane. I don’t want to add to the impact of these moments on his memory.

There are so many moments, that are becoming so much more frequent, that are testing my sanity and calm responsiveness. From the kids at the playset in Chik-fil-A or McDonalds that scream and cry to the 10 or 11 year old kid who told Lukasz, "sorry, you can't play with us. You're creeping me out." and when Lukasz tried following his little preteen group, "Sorry, kid, no offense, but you just creep me out." Not to mention the kids on his own soccer team who were talking about him and saying “He’s on the naughty list because he’s creepy.”

When he thinks back on his childhood, as we all do, obsessing over every little moment, how many memories would be of children crying or excluding him because of his face? How often would he find his memories full of fun times that were observed by an audience of gawking bystanders?  The memory of good times could suddenly become painful realizing that he was at the center of someone else’s trauma or the unknowing target of someone’s cruel words.

The Big Confession

I can easily dismiss comments, stares and hysterics and to attempt to bridge those people with Lukasz. It is easy for me to respond up beat and hope Lukasz picks up the same tone and internalizes it. But we all look back on our childhood and find ourselves re-hurt.

The truth is that when I am telling a mom “it’s ok, he/she is just trying to process different” or inviting a child over, I am not interested in educating the world to responding to craniofacial differences. I am trying to shut the negative moment down as quickly as possible, preferably so quickly that Lukasz has no knowledge of it and, therefore, no imprint on his memory to rise up in his mind when he is an adult.

A New Year

This time of year is full of joy in our family. Dressing up for Halloween (Lukasz requested a Dr. Kane costume so he could dress just like his (now) favorite person in the world); stuffing ourselves on Thanksgiving; working on our land; school programs; movies to fall asleep watching on a Friday night on the living room floor; the kids hugging each other, huddled together under blankets on the couch laughing and dreaming together about what they would like to find under the tree.

Dr. Kane, Gen. Grant, Dr. Who,
Ironman and Clara Barton

Dr. Kane

Grandma's church Thanksgiving
Luncheon.

We had an amazing holiday season. Plenty of food, warm fires at night, hot chocolate at the ready.  Everybody willingly submitted to Mom's annual tradition of minimally dressing everyone up and having family pictures taken because darn it, this is her Christmas gift. 

And the kids each received one or two things they asked for but were surprised with gifts they had not asked for but absolutely loved: five harmonicas (one for each of them), two ukuleles, and a guitar.  Yeah, Mommy! You get to listen to five kids learn how to play three instruments all at once. 

Good thing mom thinks of unmitigated noise as the most pure form of joy.      

The robes from Grandma & Grandpa
where a hue hit. As was the book on
great military leaders for Iain.

When we asked what he wanted,
Lukasz just told us "a heart, a red heart

We even FINALLY saw a little progress on our house build.  We have a well. Hurray! And septic! The electric company has flagged the ground for the underground line and foundation guys are ready to go as soon as the snow melts and dries off the pad.

The well going in!

10K in December. Says 5k but this
was their 1st year with both. 

I made more progress in my running with the help of some little voices cheering me on. Hopefully, spring marathon training will go as well.

And now we look forward to a new year, hoping that it is as good as the last.

A Quick Update on Lukasz

Lukasz was scheduled for a palatoplasty on December 17 to correct an opening in the palate and to tighten the muscles on right side of his face in the hopes that he would be able to improve his speech. In November he was filmed speaking after having barium injected up his nose. The speech pathologist determined that the right side of his palate is not working correctly and air is being lost through his palate and out his nose.  The pathologist told us that his best speech prognosis with just speech therapy would be moderate impairment.  The hope is that the palatoplasty will give him a better prognosis.  It is unknown if the nerve controlling the right side of his palate muscles is functional and, if so, the surgery will not do too much.  However, if they do nothing he will have no improvement.  His speech is understandable to those that know him well but even we misunderstand him daily.  Thank goodness for ASL. So, the surgery is a necessary attempt to give him the best outlook for communicating with his peers in his typical kindergarten next year.

Unfortunately, when we arrived in Dallas for the pre-op appointment the day before surgery, Lukasz had suddenly developed a 103 fever.  So they canceled the surgery and we are awaiting rescheduling. Of course, he woke up the next morning completely fever free and full of energy. Typical Lukasz the live wire.  For a child with so many issues, he has an incredible immune system.

An Ache at the Back of Everything

I think that most adoptive parents would admit that the parentless children they could not adopt haunt the back of their mind at times unexpected. For me this is all the true during the holidays or any moment of true family joy.  Any time I find myself comforting a crying child, I immediately think of the children who have no one to hold them when they are hurting; to tell them they are loved and everything will be okay.  I cannot help but see the flash of little waiting, yearning faces, both domestic and international that have been shared by our agency or friends advocating for particular children in the foster system or Adoptuskids.com.

So, I thought that I would end this first post of the year with a little advocating for a boy in Lukasz' home country that has really weighed on my heart. If you are interested please contact me. 

I wish I could post his picture. His face is so stressed, lips pressed together with just a hint of a smile. He is 7 and this is what the adoption agency says:

He is very sociable, he is a calm child, he cooperates with his caregivers. He has sinificant speech delays and has been in speech therapy for years. His speech therapists say that his speech development is progressing! He grew up in a difficult home environment and needs a family who will give him a loving and stable home environment.

His home life was very chaotic, and he was afraid of his foster father at first (he is now doing much better). They are now thinking some of his speech issues are due to fear. “Children may exhibit signs of anxiety and have a short attention span which may result in poor school performance and attendance. They may experience developmental delays in speech, motor or cognitive skills.” They are now saying he is improving and “the AC worker who takes care of his case says he started to speak and has made visible progress since February 2015. And what is important he wants to speak while before he did not want and did not try”.

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.