Introspection

Henry is still doing well, although tired today. He's been lethargic this afternoon, atypically wanting to stay in bed with only token rides around the floor. He tires quickly and seems moments from dropping off to sleep at all times. He is such a good boy. After all, this is his life and his struggle. He's being forged into such a champion each day.

Somehow, perhaps for the better, the time leading up to this round of chemotherapy kept me blissfully ignorant of what was to come. I fell very easily into the rhythm of our new home life and had put behind me the first phase of chemotherapy as difficult but over. Since October, I've spent the entire time beginning to absorb what Henry's diagnosis meant to some facets of Henry's life, our lives, and those of his sisters. This reflection was tossed among the daily rituals that have become normalized in our new view of reality. I felt like I'd come to a calm acceptance of day to day living within our new situation and withheld looking too far into the future for fear of becoming too attached to a positive outcome or too overwhelmed by a negative one.

The several days immediately preceding Henry's most recent admission, began to weigh heavier and heavier upon me, a sense of dread mounting with each out patient visit to have him tested for his current functions so we could recognize what the chemotherapy had done to him. At some point during this time, I began to see the chemotherapy, not as medicine, but poison. We were planning to poison my son, because nothing else had any chance of preserving his life. The effects of this poison were to leave him, and those around him for that matter, scarred for life. Hopefully these scars would be minimal - small crosses to bear, the likes of which affect some at random anyhow - infertility or hearing loss for example. This knowledge and the pause before commencing the treatment, left me to stew on the possible outcomes, no longer able to preserve my shelter of ignorance.

For the first time since Henry's diagnosis, I found myself angry at this situation. It wasn't a 'why us' kind of anger, but a frustrated, having-been-backed-into-a-corner kind of anger. There was nothing to do but accept it. Nothing could make me feel better about it. No pleasure to be taken that would alleviate it. With full knowledge of it's effects, we would administer this poison to our son, hoping that it killed it's target before it ravaged him. I withdrew into myself, not really understanding my feelings well enough to talk about them to anyone.

Several days passed while I attempted to work this out in my head. I exercised, meditated, ate better food, tried to relax; all attempts to calm myself about it. Nothing helped. Nothing would change what was about to happen. It wasn't until I had my first turn in the hospital with him, seeing him doing well - laughing, playing and entertaining - that I was able to better accept our path. I woke up to a new level of realization and with it, a new wave of grief.

Momentarily lifting my head out of my anxiety for our future, I found the effects of Henry's diagnosis rippling out to so many people, some very close and some at a distance. I realized that I've not been as attentive to those immediately around me - my daughters, what is this doing to them? I picture their sweet faces looking up at me with a sad, innocent and inquiring look, eyes welled with tears. I look at my wife and imagine us on our wedding day, never guessing what could lie ahead, wishing to avoid things like this. I see our parents being supportive but looking behind their eyes - I see their empathy for us and their own plight of having a grandchild with cancer, wanting so desperately to help or fix things and not being able to; our relatives, watching and being supportive where possible, going about their normal days only to be reminded suddenly of what's going on at odd moments throughout the day; circles of friends feeling helpless but offering such wonderful support despite it all; parents of our children's friends trying to give answers to their kids - knowing that no kid should have to worry about such things; barely beginning to appreciate the years and years of treatments those families we see in the clinic have endured and are to yet endure; watching kids during chemotherapy and seeing them colorful and playful one minute and ashen and sickly the next.

There are days I feel completely inadequate to handle what's been handed us. Other days I feel capable, but wary because I know it's simply a function of time before that changes. In lieu of describing this whirlwind of emotions, my answers are brief and guarded when others ask how we're doing. I'm not sure I could describe it anyway, my emotions change at such blinding speed. When people marvel at how we're 'doing it all', I have to think, 'if you only knew'.

Yes, there are opportunities for growth in all of this. Adversity does that. But it's difficult to take solace in that. It's a difficult pill to swallow that one's growth is coming at such an expense. But what are we to do? In the face of such a crisis, we pick ourselves up, arming ourselves with the comfort and support of family and friends and make the effort to take one step, one day, one moment at a time.