Here are a few words that have popped up frequently in conversations I've had lately. In some cases the context has been Nathan's disease and the pressures it puts on our family, in others the context has been music or other "normal" topics. I just find it somewhat interesting that they keep popping up. "bleak" and "forlorn" are words that have been used to describe music that I have recommended to people. I haven't been purposefully seeking bleak and forlorn music, but I must be drawn to in that direction in general.

1 : exposed and barren and often windswept
2 : COLD, RAW bleak November evening
3 : lacking in warmth, life, or kindliness : GRIM b : not hopeful or encouraging : DEPRESSING bleak outlook c : severely simple or austere

1 : BEREFT, FORSAKEN forlorn of hope b : sad and lonely because of isolation or desertion : DESOLATE forlorn landscape
2 : being in poor condition : MISERABLE, WRETCHED forlorn tumbledown buildings
3 : nearly hopeless forlorn attempt

intransitive verb
1 : to cherish a desire with anticipation hopes for a promotion
2 archaic : TRUST
transitive verb
1 : to desire with expectation of obtainment
2 : to expect with confidence : TRUST

I couldn't quickly find a good definition of "fair" in the context it is used, which is often, "It isn't fair that you have to go through this". The closest thing I quickly found is in the synonym "just".
2 a (1) : acting or being in conformity with what is morally upright or good : RIGHTEOUS (2) : being what is merited : DESERVED just punishment b : legally correct : LAWFUL just title to an estate

Fair/just is an interesting one. Buried in the various definitions of fair and just is this concept of conformity with what is merited, or deserved. There are some things that no one could deserve. If something can't be deserved, then fairness is a concept that cannot be applied. No child deserves to be sick. No parent deserves to watch their child fight for his or her life or to be forced to make decisions based on weighing length versus quality of life. These things aren't fair because the concept of fairness cannot be applied to them. They aren't unfair either. They can't be.

Being a parent is an awesome and terrible responsibility. Dealing with this disease is not what I expected, but it is what I signed up for.

All definitions taken from www.webster.com.

1 comment:

matt dick said...

I honestly don't see so many things written down that I think are profound. The last was by Helen Keller, incidentally. I will add this to my list:

"Dealing with this disease is not what I expected, but it is what I signed up for."

You're 100% right that parenthood is an awesome responsibility. I have never been faced with something like the life's length/quality decision obviosuly, but I feel the weight of the decisions I do make and the kind of person I can expect my children will be as a result.

Perhaps for those lucky ones amongst us, parenting is an awesome responsibility without being a terrible responsibility.