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.