I cannot say things like "my kids are driving me nuts" without immediately feeling I should take it back. And then getting a little weak in the knees knowing what a privilege it is to raise children who have the ability to do so.
I cannot indulge in self pity without the acute knowlege that as far as cancers go, millions would kill to be us. Parents who hear the words "your child has leukemia" arm themselves to fight and worry about the future. Parents who hear "your child has an untreatable (degenerative disease, tumor, condition) know the odds of their child having a future is stacked against them.
I add a mental footnote to every plan that involves the future.*
*If. *If this disease does what it is supposed to. *If there isn't a relapse. *If (unnamed, sinister posibility).
The things I thought I would feel, should my child ever be diagnosed with something that would kill him if not successfully treated, I don't. I thought I would feel a lot more despair, fear, anxiety. Instead, I feel a mix of awe at our good fortune of having the option of treatment and helpless anger at the assault on Daniel's innocence and the utter lack of reason in a child getting cancer. The anger under the surface of every lighthearted conversation is still surprising to me. As is the way these two seemingly opposing emotions fit together almost seamlessly with no apparent acknowledgement of each other. Like a couple married for sixty years who are as familiar with each other's movements as their own, but yet somehow manage to go for weeks without noticing each other's new haircut.
I don't think I believe everything happens for a reason. Believing this means believing an innocent, undeserving child is paying a ridiculous price in suffering for some obscure scheme to come to fruition. Believing this raises questions I can't deal with. Nor can I deal with the dissonance it creates in me to believe that a child might be expendable collateral damage in some grand project of personal or societal betterment. It is a far easier thing to accept that there is no question, no reason, a cell simply became disrupted and divided abnormally, and so did it's subsequent generations, and here we are after those cells crowded out the healthy ones. It didn't happen to us for a reason, something worse didn't happen to someone else for a reason. It just is. Time and chance. And now we deal with the raw deal Daniel got.
I feel simultaneously more connected and more isolated than before. People have reached out to us from the most unexpected places, people we have driften apart from and not spoken to in years. Friends I used to be in almost daily contact with rarely call me with random things they consider to be petty compared to what I'm dealing with. When I ask friends how their lives are going, before they tell me of daily frustrations, they qualify them through the lens of Daniel's cancer and downplay them before relating them to me. As much as I understand the daily grind of the small problems women commiserate about and help each other through, sometimes the thought does come unbidden that to have annoyances be my biggest worry would be luxury. But I miss mundane. Mundane makes me feel normal.
Sometimes I realize I have responded to something stressful with the sort of patience I wish I had. Sometimes I realize I have responded to something with love and empathy that actually merited banging my head against a wall. And sometimes my BS meter pegs out and I walk away. Anger or frustration over situations of daily life has become tedious to accomodate. Sometimes the high road, or rather the emotional bypass, while enabling less than ideal situations to continue and less effective for avoiding future repeat conflict, is just easier.
Time in hospitals moves differently. In the lack of stimulation, time sometimes flows by unnoticed. In the same way pre-child me used to love long, sensory-deprived runs and bike rides after dark because they seemed to go by faster without landmarks to mark progress, suddenly I notice the sun has dropped behind the mountains from our seventh floor window and I have no idea what we did all day. We live in the cubicle that is our room, our daily routines shrunk down to an approximately 12x20 room dominated by an IV pole, and sometimes, time inexplicably shrinks as well while below us on Colfax Avenue the traffic moves, the world turns, the tiny people live their lives.
And the practical stuff.
We've learned to shower in the morning, as early as possible, to experience warm water on 7 west. (7 east has abundant hot, or at least warm water, which somewhat compensates for the added restrictions over there.)
We always order the maximum allowable food from the room service menu. Someone will eventually eat it, if not the patient. If you don't have an extra package of crackers hidden in a drawer, you may end up eating your own face in a bored moment.
When one hits the call light, it can take a long time for someone to show up, but foul up the bathroom that has no fan in the small space four people live and experience bodily functions in, and within seconds the room will be full of nurses, doctors, child life specialists, social workers, and even a housekeeper or two. I don't know how this works so efficiently. I have decided that in the rare event of a code situation, the effects of yesterday's broccoli will probably be more effective at generating a quick response than hitting the blue code button on the wall. Truth.
Sleeping in hospitals is like camping- only your first night here is sleepless. After that, the exhaustion pushes you into slumber no matter what is going on in your room or outside your door. In this way, multi-day stays are best. The longer you stay, the better you sleep. Although somehow, you still manage to look like a strung out, greasy-headed druggie with big red veins popping out of the whites of the eyes and the inability to form coherent sentences. I hit the call light to report a beeping pump with a readout saying "Infusion complete". When the disembodied voice through the speaker asked if it could help me, I asked it to tell our nurse that our confusion was complete. Clearly, my mouth knows my brain better than I do and says what's actually on my mind.
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