"Mommy, my head is not scared, but my soul is nervous." - Kenny LaJoy
Sometimes this kid just says things that grab my heart. He is so easy to love. That is where Kenny's emotions are right now. I think this picture taken just before we left for the airport says it all with his expressive face, there is a hint in his eyes of the trepidation in his heart.
We are here at Shriners Hospital for Children in Chicago, having checked in at 10:00 AM this morning. We were visited by several members of his care team and everything about the procedure for tomorrow was thoroughly explained. This was Dominick's first time here, and he was as amazed as I was the first time. I swear, down to the very last person on staff here these people are so gifted at working with children, and are so warm to every one. There is a kindness that permeates this entire institution which certainly contributes to the healing of children and their families. When compared to Kenny's cleft, there are children treated here on a daily basis whose conditions are far more serious, and like Kenny they simply couldn't find a better place to have their medical needs met.
I will be spending the nights with Kenny the next two nights, then heading home for Colorado on the last flight out on Friday while Dominick remains here another two days, then they both come home on Sunday. I still feel a little guilty about leaving early, but I have the last of my ministry classes for the semester on Saturday and Dominick gave me a lecture about "I love him too, there is no reason for you to miss your class, I will be there, you need to do this as it is important to you...blah blah blah." and he ultimately convinced me it was OK when he reminded me I have done all the other medical stuff with the kids including most ER visits over the years and vaccinations.
Today was spent largely just hanging out, exploring the hospital, and learning more about what is to come tomorrow. Kenny visited with a couple of the other patients, and right now he and Dominick are playing a Wii and I will have a hard time pulling either of them from it. There is a large multi-purpose room with an indoor basketball court and lots of game tables, and there is a smaller play room right across the hall from Kenny's room.
The surgery will be tomorrow morning, around 7:30 AM and Kenny is the first one of the day. This will be good as he will then not have any time to fret over anything, and it will be over before he knows it. They will be closing the fistula in his palate, and will be grafting bone from his hip to replace the missing bone in his upper jaw from the two clefts. They explained that they will likely make an incision all along the inside of the upper part of his palate and then gently maneuver the tissue to hopefully close the opening. Then they will make incisions on the outside of the upper jaw along the gum line and that is where they will place the bone grafts. We learned today that they are not certain if they will be able to graft both clefts, as it will be dependent upon the amount of bone needed...if too much is needed they will do one side this time, and the other later on with another surgery. It is still undetermined yet if he will indeed have to have another tooth pulled, as they will examine the root and make a decision at the time of surgery. He will have a tube remaining where the incision is at his hip which will allow a pain reliever to be delivered directly to the location where the bone graft is harvested. Evidently the hip will be painful for several weeks, but they will want him up and walking as soon as possible afterward.
Kenny's biggest fears right now are when I will have to be away from him before surgery...he would like me there until he is asleep, and when they will insert the IV as he is very scared about that. He is drawing comfort from his teddy bear and his blankie right now, and they are laying on his bed while he is off playing.
As always, it seems there is an opportunity for understanding and processing his life on a deeper level, and at lunch today a mom, grandma and 5 month old infant boy with a cleft lip and palate sat down next to us. Kenny stared thoughtfully at the baby for a long time, and then said "Hey Mom...I think baby's with lips like mine are actually cute! Maybe I was cute too!". We talked about the pictures we have of him when he was a baby and how cute I thought he was, and that most people don't even think of a child's cleft...or any other obvious physical issues...once they get used to seeing a child or grow to love them, it is just part of who they are. He asked me if I would have loved him with his cleft when he was little, and I said "Of course, that is part of what makes you Kenny LaJoy!". And another step in soul healing took place as Kenny is slowly accepting who he was and internalizing it. Maybe one day he will see the handsome, bright, wonderful young man that the rest of us see.
In an odd little twist, Dominick and Kenny were playing in the game room when they were approached by someone who works on staff here at the hospital and asked if Kenny would mind having his picture taken playing with a new piece of rehab equipment. They are evidently putting together some new literature or some sort of media item and have been taking photos all day around the hospital. As they were taking the pictures, the woman who had asked for permission to photograph Kenny mentioned to Dominick that he and Kenny both looked very familiar, but she couldn't place where. I don't know how they came up with it...and don't know what the odds are that this happened...but it turns out that she has read our blog! She has a Google alert for items relating to Shriners that appear on the internet, and so she stumbled upon us that way. She said she printed out my post where I wrote about Shriners and she shared it with several staff people so they could see what patients' experiences were like here at what they were saying.
I was so surprised to learn this, and pleased as punch to know that somehow something I have written about this phenomenal place may have served to encourage the unsung heroes who work with people. When you see the faces of the children served here, when you begin to learn their stories and see that each and every one of the families is treated with the greatest of respect, regardless of their station in life, it is a gift of untold proportions to all of us who are the beneficiaries of Shriner's dedication. I know for our family, the gift of this medical care literally means we don't have to take out a second mortgage on our house to get Kenny the care he needs.
So the evening is winding down now, there is a soft rain falling and we have gray skies. And now I must somehow get my head in a place where I can handle what comes tomorrow. I know when compared to other parents who are in life and death struggles with their children this seems minor...many would gladly trade places with us to have to only deal with a cleft versus other far more serious health issues. But for this mommy, this is my first time dealing with any sort of medical issues beyond the minor bumps and bruises...ok, and broken arm or Lego up the nose...and I am worried about it all. I know it is going to be extremely difficult to see Kenny in pain tomorrow. I give thanks that it is not as bad as it certainly could be, and yet my heart is already hurting at what lays ahead of us. And now I am off for what I know will be a sleepless night, and I think that like Kenny my soul is a little nervous as well.
I think Kenny has far more courage than I do.