The Ups and Downs

I am exhausted. I don't mind sharing that with you. I have slept very little the past few nights, been on the run, and feeling very weary tonight as I write. Even as I write these words I say to myself "Why the heck would anyone care about that???". Often I see this blog as mere babbling of mine with nothing much profound coming out at all, and then I will be reminded, perhaps by a private email, that somehow someone's life has been touched by the silly words I put together. I have been told over and over again by so many of you that it is the honesty you have come to appreciate, and so here I am, honesty up the wazzzooo tonight.

We had our meeting at Children's Hospital in Denver with the Cleft Team yesterday, and it went very well. We saw 8 specialists in one very long day, then the long 5 hour drive back home. I found myself marveling at just how good they were at their jobs, how in 2 seconds it was easy to see why they are considered the elite in their fields. To the number, each of them had a wonderful rapport with kids and truly appeared to have a passion for what they did. Thanks to close friends of ours who have dealt with cleft, we already felt more knowledgeable walking in the door than we otherwise would have. We were told that Kenny's cleft repair in Kyrgyzstan was surprisingly good, but that his palate that was repaired has a pretty large fistula (hole). We are looking at least 4 surgeries over the next 4 years or so, as well as significant orthodontic work. They suggested we work with a pediatric dentist and orthodontist team that is in Glenwood Springs, which is still over 2 hours from our home. We will go with their recommendation despite the awkwardness of such travel on a regular basis, because we'd rather have it done right the first time and this team is supposed to be very, very good and have a lot of experience with cleft dentistry. We have an appointment for the end of September for our first visit. We were told there are no guarantees that the palate repair will fully close the fistula, as it is large and expected to increase in size with the orthodontic work to spread his palate. There is a nose and lip revision called for, as well as a revision of his philtrum, which is the area below the nose and above the lip where it naturally dips in. He will definitely need bone grafts on both sides of his upper jaw and likely to need implants when it is all done. They also want to see an appliance called a obturator used for him to temporarily close the hole in his palate so we can more successfully work with speech therapy. It was described as being like a retainer.

So, quite a bit ahead of us, quite a lot of painful procedures for Kenny, who continued to show trembling fear at the prospect of seeing the doctors until he realized well into the day that we could be trusted and all they were doing was looking at him. We have no idea at all how much all of this will cost, and with an $8000 out of pocket deductible/coinsurance each year it is a significant financial concern for our family. Somehow we will figure it out, I know, but it leaves us with some sleepless nights. Before we traveled to get Kenny we were told his palate had been repaired and so we were not expecting as much medical expense as we are now going to have to face. When I let my mind settle on it for too long, I get scared as does Dominick, but we also trust that God would not bring all of us this far if He didn't have a way for us to handle it. I don't believe in pennies from heaven but I do believe in hard work and sacrifice, and neither are strangers to us. However, we did have a small blessing Sunday morning when we were literally standing at the front door ready to leave and our next door neighbor came over with a thank you card for a small writing task I had done for them, and in the card was a $50 gift card for Chili's restaurant. We had just been saying not 10 minutes earlier that we had no cash for the 5 hour overnight trip to Denver and wondered what we could do to keep the food costs down, and there we were handed the equivalent of 2 evenings meals for the 3 of us, totally unexpected. We were very surprised and thankful for that.

Kenny did very well the entire trip. He had to be constantly reassured that he was not going to get a "boo boo", but other than that his behavior was awesome. Every specialist we met was astounded at how far his English has come in such a short period of time, and how he obviously understood almost everything said to him.

Then, we enter the Kenny Zone, where today was really not a good day at all, in fact probably one of the worst we have had since returning home. I was met almost at the school door this afternoon by one teacher who informed me that Kenny got into a fist fight with another boy today and was bossing him around which is what started it. Kenny has this sense of entitlement to tell others what to do, and kids his own age don't take kindly to it, nor do those who are old enough to be his mother...or ARE his mother! There are days where it never happens and then there are days, like today, when he digs his heels in and is going to be in charge, no matter what, and I can tell he thinks we are idiots by the tone of his voice. 2 more teachers stopped me to say that they had problems with him and then I finally hit his classroom and his poor teacher said it had been a very difficult day with him. He wasn't listening, was telling everyone in authority "no", and was generally just being a pill in every regard. I still had to go get Matthew, so I firmly told Kenny to stay in his class and I would be back in a minute. I returned less than 3 minutes later and there is Kenny, walking down the hall acting oblivious to what I had told him. I grabbed him by the backpack and marched him back into his classroom, telling him he is to do exactly what I ask him to do, not what he wants to do, and he was to sit down right now. I spoke at length with his teacher, who happened to have another great teacher there who had retired recently but was back for a visit and helping out. I then asked Kenny to come over and I sat in a chair eye to eye with him, and read him the mommy riot act. I was calm, I was rational, and I let him know I was very angry with his behavior. I purposely did it right in front of his teacher, so that he would know we are together on this, and he did try to tell me he would talk to me in the car but I told him that we would talk about it right there. He admitted to not behaving at all, to telling her no several times. I made him apologize and reminded him that we had a deal and he now owed me 30 minutes sitting on his bed once we got home. I think the thing I am finding the most frustrating, out of all the behavioral issues, is that I have to remind him constantly that he is not the boss, that he is not an adult and he should not correct others as if he is their parent. This seems to come naturally to him, and I know he has talked about caring for the younger kids at the orphanage. However, we need to curb this ASAP.

So, we came home and off to the bedroom he went. To his credit, he did go without complaint. I know today's behavior was exacerbated because he as very tired himself from getting to bed late the past couple of nights. Understanding it and trying to correct it are two different things. Being consistent with him, being vigilent, it's very wearing at times. And then there is the feeling you are making others' lives more difficult because you decided you were up to the challenge of parenting a child like this. We had a choice in this, his teachers did not. I couldn't ask for more support than we have gotten from the staff at school, but there is a part of me that actually feels guilty for making their days so challenging with the addition of Kenny in their classes. I know, I know...it's their job...but at times it feels like this is really asking them to go above and beyond the call of duty.

Then at a meeting I was at tonight I kind of lost my patience and copped an attitude I shouldn't have. I wasn't completely obnoxious, but I certainly wasn't at my best nor was I proud of the way I acted and I know it came across. I let the frustration and fear get the better of me, and it came out about an issue that wasn't even related nor worth the effort expended. I usually try so hard not to be negative, as there are certainly plenty of people in line waiting for that particular pleasure. Tonight I fought the battle and lost, and I showed an incredible lack of grace...something I am not all that full of in the first place.

Tonight as I sit here and type, I know in my heart it is all worth it. He is undergoing enormous changes and dealing with tremendous pressure every single day. Sometimes, because overall this is going so well, I tend to forget that it has been a mere 3 months, a smidgen of time, really, and many kids are barely settling in with their families by this stage. He is not at all showing signs of being a "bad boy", and his gentleness and forgiving nature continues to surprise me at odd moments. But today...today only..I am feeling a bit defeated, only for a few hours. I know that even parents of bio kids go through days like this, and I don't think at all that it is abnormal of me, but I don't like feeling down like this. I know he needs me to be very positive and upbeat right now, that he needs to see through my eyes that I see him as a success. Tonight I am just having a harder time summoning up the enthusiasm. But only for tonight.

Tomorrow is a new day, we'll all wake up well rested hopefully, and the world will look different. The ups and downs are easier to take on some days, harder to take on others. Regardless though, I wouldn't change it at all. For it is the difficult days that make us appreciate the good ones. Now, Pollyanna's evil, depressing twin sister "Witchy Poo" is going to get some much needed sleep, assuming Joshie doesn't wake up crying again for the third time in a week!