Finding balance

Had we not learned about Kai's condition a month ago, we probably would have noticed that something was not quite right by now. It would seem troublesome to us that he often complains of tired or painful legs (the medical term for this is "claudication" and is typical of aortic coarctation until it gets treated) or that he sometimes has a hard time keeping up with his more energetic peers. But maybe we would have just written off his complaints as growing pains and attributed his fatigue to a bad night of sleep. Now we interpret and react to things from the perspective of our new knowledge. We know that there is a something wrong, even if we can't see it. We know that in less than a month, he will be in the hospital. We know that things will be done to his body about which he has no clue. This awareness is unsettling. It makes us vigilant about every harmless little cough or stomach ache. In a way, we've been thrown back to the first year of parenthood when he seemed so fragile and we were inexperienced. One of the nice things about Kai's evolving independence in the last year was that we could relax, let go and just let him do his own thing. Now we feel protective again and it is sometimes hard to distinguish between the things to justifiably feel nervous about and the things that are just an inevitable part of the bumpy road of childhood.

Part of carrying on life as usual is occasionally getting frustrated and angry at Kai when he dawdles or turns a deaf ear to our requests or demands attention when we can't give it to him (all completely normal for his age). Part of me feels terrible when I scold or discipline him, because theoretically each day is so precious now. But, we also want to preserve a sense of normality and, of course, normality spans the spectrum from tenderness to annoyance.

Some people say there is a lesson to be learned in every challenge presented to us in life and I've been wondering what we are meant to learn from all of this. I inevitably think back to Kai's first year in Boulder when we took him to weekly physical therapy sessions to work on mobility issues related to "torticollis" (a twisted neck muscle that probably occurred in the womb when Kai suddenly decided to go breech in week 36). While other children his age were passing those developmental "milestones" of rolling over, crawling and sitting, Kai was just lying there. I had to force myself not to compare him with the other children, to accept where he was at developmentally, and to trust that he would eventually catch up--which he did. I thought I'd learned that lesson of humility and gratitude, but I guess I didn't fully internalize it. Otherwise I wouldn't be thinking critical thoughts such as "why isn't he speaking German back to me, as other bilingual children do?" or "others don't seem to have a problem diving under water, why is he so afraid of getting his hair wet?"

Kai's diagnosis, and the month we have to digest this news and prepare for the surgery, is forcing me to confront all-too-familiar patterns of criticism and expectation, when it is actually so easy to delight in all of Kai's gifts (he's smart, good-natured and has a quirky sense of humor). Likewise, it is easy to worry about all the things that can go wrong during and after surgery and to dwell on the fact that statistical odds have not always worked in our favor. But, in fact, there is much that is positive and that can go right. In the beginning, those positives held me afloat. I made lists of them (1. early detection 2. excellent surgeons at UM 3. no heart damage 4. my insurance covers everything 5. timing of surgery is good in terms of work schedule 6. young children bounce back quickly from surgery 7. we have wonderful family and friends ...) and whenever anyone mentioned another one, I clutched on to it. Now those positives compete with statistics about surgery risks and anxiety creeps back in. The lesson I need to learn quickly is to cede control and to have faith. Ah, yes, faith. That one sounds familiar.