Slipping

The last few days have been really nice. We had a very normal New Year's Eve with friends and the beginning of the year has been low stress and uneventful. Tara has begun work again after a nice break and we're beginning to get excited for a trip to Kansas soon to visit relatives. It all seems very normal and for that we're incredibly grateful.

Ignoring the blog, (almost) forgetting to administer Henry's steroids, hosting the Hospice folks - but only occasionally discussing anything material - all allow us to thankfully deny the inevitability of things and maintain a 'normal' life. We've been so busy and Henry so full of energy that I unexpectedly found myself with a few moments in the house by myself recently. I sighed in relief to have a couple of minutes to think, but was wishing it away moments later. It seems the bustle keeps my mind off things.

There's a sort of guilt I have for how easy things are now and how I cannot seem to gather it all up completely enough. Henry's enjoying life, pain free, oblivious to the pending crisis. The girls are too, happy to be taking trips, enjoying their mother being at home more. I read with great difficulty, how other children with cancer are coping. In a moment I feel like its worlds away, empathy, then quickly realize that one or more of those scenarios will be ours. How to feel?

As for Henry, I can't say enough how spectacularly he's doing. He's sleeping relatively well and has an abundance of energy. He's maturing and gets excited about things. He's been actively recalling memories of times past, almost as if he previously lacked words to describe the events, but now recalls them with great detail. Today we ran around in the gym at the YMCA with friends. He asked me after feeling my forehead, "How can I get sweaty?" He raced back and forth to the water fountain in his attempts. The effect of seeing him run and laugh is so soothing to me. He gets lost in play and it is so so good, so 'child', so pure.

When he goes to bed at night now, I can't help but think in a very discreet way, that we've slowly slipped beyond another day. It's that way for us all, but I guess the sheer quantity that we think we have blinds us to the value of each and every one. I cry sometimes to think of how soon I may wish for the day I have with him at this very moment. I try to soak it all up but I get this overwhelming feeling of trying to absorb the ocean, of trying to hold back a flood, or trying to keep the sun from rising. Time quietly slips away and is gone and that's all there is to it. We only have this moment. And memories.

Tonight as I read my email before bed, I checked on another child we watch that has the same disease as Henry's. He's recently had a downturn. It was painful for him and I'm not sure I've let myself imagine what it was like for his parents. Tonight's post from his mother was to let everyone know that he'd passed on late last night. As inevitable as it seems it doesn't make it any easier to know.

I'm off to bed now and, having written, anticipate that my mind will finally let me sleep. I hope to wake up and slip into the din of normalcy again tomorrow. But hopefully, I can carry enough perspective with me appreciate the preciousness each and every moment.