Kenny and I arrived in Chicago yesterday afternoon after an uneventful flight. His behavior was back to normal and he was a huge help with luggage and listened very well the entire time, much to my relief. We were met at the airport by our dear friends, and man...was it good to see them! Their kids were at home waiting for us, and seeing them rush out to greet us was, well, I felt like I was coming home in a sense. We all love this whole family so much, and one of their daughters had made a sign for us hanging on the mantle welcoming us to Des Plaines (a suburb of Chicago). The only thing missing from all of this was the rest of our crew who were sadly left at home for this adventure.
We BBQ'd dinner, took a tour of their new home, and then after dinner we all went for a long walk around the neighborhood. I really enjoyed seeing the brick homes and unique style of each home rather than the cookie cutter style I was used to in the city in California. It also was interesting to see a little of what Dominick grew up with in his youth out here. We had a bit of magic as Kenny and I saw our first fireflies...what cute little guys they are! The evening ended late as we all watched a movie together lounging around on the couch. We had an early morning to get ready for Shriners.
Today we arrived at Shriners for our appointment at 8:00 AM, and from the moment we stepped foot in the place we were cared for in a way I have never experienced in my interactions with the medical profession over the years. There is not even a Billing Department, as they don't charge you at all so no need for frustrating paperwork during the stress of such visits. It is not a huge facility, feeling more like a small town hospital than a Big City medical center. There is a nice cafeteria that sits beside an indoor basketball court and small indoor playground. There were game tables for the older kids, a "teen lounge", a really nice outdoor playground...everything a child could need. They have put a lot of thought into their facility and they even considered grown up needs like a washer and dryer for parent use for long term stays with recovering kids, a parents suite to sleep in so you can be close at hand, and there is a creative play/therapy room as well to help parents occupy healing kids who are not bed ridden but not ready to go home.
Throughout the place it was child centered, but not overly so...not "cheesy". Just warm, caring and thoughtful in many regards. I REALLY liked the way each person involved on the cleft team addressed both Kenny and I rather than talking over him as if he wasn't there. It showed a lot of respect for his feelings about everything.
So we visited with each of the many specialists on the team, received a lot of information about what to expect in the future and had a lot of concerns addressed in a forthright manner. It was during our visit with the Psychologist just prior to our lunch break when I was blindsided by what turned out the be the single hardest question I have had posed to me as a parent yet.
The Psychologist had done a short evaluation and then turned to Kenny and asked him "So what would you like the doctors to change or fix for you?", Kenny seemed taken aback for a moment and then turned to me and asked "I don't know...Momma, what do you want them to fix? How do you want me to look?".
At that single moment, looking into Kenny's eyes which were so innocently looking back at me waiting for me to provide an answer, I felt my heart skip a beat. How can any mother possibly answer a question like that and not feel as if she is juggling with daggers and no real experience to keep everyone safe?
I could say what part of me thinks is 100% true...that I don't want anything to be changed as I love him just the way he is and don't really see anything wrong with how he looks at all. To me he is my darling, handsome son who ceased to be my "newly adopted cleft son" long ago as he slowly drifted into this relationship and became simply Kenny. I'd be lying if I didn't admit that for the first several days, the cleft stood out to me...I had to grow comfortable with it and the difference it represented. Now, it is no more of a difference to me than the color of his eyes or hair color that make him unique. In fact, I can say that I will have other adjustments as various surgeries are completed and his profile changes subtly each time...it will require an embracing of the new Kenny each and every time.
However, there is a fact that remains that I am Kenny's voice to the world. He is 9 years old, he doesn't have the maturity yet (although many kids might at this age) to express what it is specifically that he doesn't like about his appearance. He can't explain it beyond "I think I am ugly!" or "My face not handsome." which he expresses in a very accepting, almost nonchalant way. It takes work for me to pull things out of him, I have to guide him to a certain degree and to provide descriptions and words for him. I have a responsibility to help him sort these things out, to help him better understand his own feelings.
What tore me apart though, was trying to figure out how I answer that question without answering it...without giving him the impression that I think ANYTHING needs to change about his appearance...that we don't love him exactly the way he is and consider him a perfect being despite what others might see as less than attractive. I could see in his eyes and hear in his voice that my answer was of utmost important to him, and I knew in my heart that he would carry my words with him for a long time to come, that he would hear them in his head as he looked in the mirror every morning. This was not an imagined defining moment, I could tell by the great interest with which the Psychologist was listening that she too recognized it as such.
Caught between a rock and a hard place, or perhaps more accurately between love and responsibility.
I gently tried to take another path, I tried to guide him about what practical things needed to be improved...repairs so his speech is better and so his eating is easier...wanting to use a straw...things like that. But that had nothing to do with his appearance and he and I both knew we were at an impasse, both of us needing a little time to think. I suggested we talk about it over lunch and we could get back with them about it afterwards. I know, it was a cop out and I grabbed on to it if only to buy me a little more time to consider how best to approach this.
After getting our food at the cafeteria and barely sitting down, Kenny turned and asked me "So mommy, are we going to talk about this some more?". I put my napkin and fork down and turned to him and said "Kenny, you always tell me you are ugly...when you look in the mirror, what do you see that makes you think you are ugly?". Looking away from me, he softly said "I don't know momma, I just know I ugly." then he said "I need your help mommy, you always have good ideas...I need your ideas to tell them.".
What to do...what to do....I decided to put the ball firmly in his court, that whatever I said I could not be the first to say anything or it would forever remain a part of him.
I replied "Thanks Kenny! I am glad you think I have great ideas...that is really nice of you to say. But sweet, I love your face, I love the way it looks, I don't think it is ugly at all...but you do and that is very important. I want you to like the way you look, to think you are as handsome as Daddy and I already think you are. So I really can;t give you any ideas on this. You need to think carefully and share what it is that you think is wrong. When you look in the mirror in the morning and the thought comes into your head that you are ugly...what is it that is the first thing you think of when you are staring at yourself?" He thought and thought, twirling his fork around in the air and then said "The lines under my nose are crooked, why are they crooked? Why are they not straight?". We then talked for a bit about his scars and how the repair had been made and that maybe the doctors here could make that look better if it bothered him. He then said "My nose look very funny, not like Matthew or Joshie's and I want to look like them.". We talked about the distinct features of his nose, with me trying to draw out of him specifically what he would like to see be different. Like many cleft kids, he has an indentation at the tip of his nose, and his nostrils are not formed quite correctly but actually I think are quite good for the severity of his cleft.
After a few more minutes of talk we kind of let it drop as we ate, and then as we got up to return he grabbed on to me and gave me a huge bear hug and said "Thanks mommy for helping me to talk to them. I not know what to say and you always help me think good.".
As we walked back, his diminutive body next to mine but his hand firmly gripping my own, I thought about how much courage he has, this son of mine. Outwardly he is my most confident son, facing the world almost fearlessly, easily meeting others and knowing he will somehow make a success of himself in whatever he does. But beneath the veneer of confidence is a very vulnerable little boy, with a spirit that has been damaged not necessarily by negative comments but by a lack of positive reinforcement. It is up to us to shore up that spirit, to help him move beyond those negative thoughts and not internalize them so much.
I lay my head on my pillow tonight asking God for more wisdom as I do my job of mothering, to help me see what I need to say and to find the right words at the right time. I am not at all sure about the outcome of today's heart to heart conversation. I question whether I handled things right, if the way I see a situation is clear enough to show me how to best deal with something. There is no road map, and today is when I sure could have used one.
I have had some hard questions thrown at me over the course of the past few years...questions about why would someone abandon me, why does God let our people eat out of trash cans instead of giving them good food, and "Why did you pick me to bring home?". But today's question was the #1 hardest of all time to answer. I walk away feeling like I should receive a C- on this test, and hoping that next time I am caught off guard I can do a better job.
I will lie here and think about a little boy whose smile lights up a room and whose expressive eyes can speak more than any words can. And that little boy is not ugly, not by a long shot. But I am still stuck with the hardest question of all...how do I convince him of that?