Saturday, February 18, 2012

And so on, and so on...

Here we are again. Jackson had his quarterly clinic last week, and I couldn't have asked for a better visit. The mild winter and his now five month long streak of NO antibiotics has been amazing, but left a little piece of me wondering if somehow we'd be ambushed with something unexpected at our visit. But as the appointment progressed, it became clear that we were in the midst of a celebration day. His lungs sound great, and his height and weight have stabilized and are on a NORMAL growth curve. Until now the lines on the chart have looked like someone gave an etch a sketch to a drunk and asked them to draw the Mona Lisa. But now, we are looking at a steady, gently upward sloping set of lines that are almost parallel. 77th percentile for height, and ....wait for it.....50th percentile for weight! Jackson dropped below that level around August of 2010, and by the time he got his G Tube, he was under the 5th percentile. Even with the tube feedings, it has not been an easy road back. But his health has undeniably improved since then and I can easily say we're at peace with the decision. This was also the first time we made it from one regular check up to the next without a sick visit. I'm not counting the broken G Button trips to the ER, because those were mechanical errors, not illnesses!

So all in all, things here continue to be on the up & up. I remind myself each day that even if something happened and Jackson had to be admitted to the hospital tomorrow, we still made it five solid months with no illness, and that's a triumph regardless of what happens next. I'm finding now that I struggle with being able to really enjoy the relative peace. It's frustrating sometimes, the rare moments come along when there is nothing looming over our heads, and I know that all I want is to enjoy that moment for as long as it lasts, but sometimes I can't. When the unexpected becomes the norm, the habit of expecting the unexpected becomes hard to break. But it's something I'm working on. I read an article recently titled "Don't Carpe Diem",and while I truly get what the author is getting at, I also wholly disagree. Yes, there are a lot of hard moments. There are times I don't want to do it, times I feel pants-on-head crazy. But I embrace those moments, too, because without them- without the hectic, harried, redundant nonsense- there are no 'Kairos' moments. Because that's who I am. I feel EVERYTHING. All the time. But I live in each moment, because the next isn't promised and the last is already gone. But at the same time, after a few years of living in a cycle of love, fear, joy, pain, that CF brings, it's hard not to always feel the fear coming back on when the joy sets in. What I'm hoping is that I can learn to embrace the joy, even when I know fear may be just behind it. So today, I chase my healthy, happy, and very loud kids around, and instead of asking them not to yell in the house, I crank up the music and yell with them. Like a receiving line, I can only shake one hand at a time. And today I shake hands with joy.