the climb

i forget so quickly. 

i forget her challenge.  i forget that all the good days we have are little gifts.  and that they require tremendous effort on her part- and some fairy dust.  and when we've had a lot of good days, or even weeks, i begin to take them for granted.  i begin to settle into the false idea of a new normal.  i begin to live in this new place- i move in and get comfortable.  but then, unpredictably we'll have some moments.  and these moments don't jive with my new normal.  these moments are much more upsetting in my new place- even if they are relatively small moments.  so i get confused by her. i become frustrated by her, and angry and annoyed and impatient.  why are you messing this up?  why are we having this conversation? why have we not moved past xy or z?

i start hearing myself say things like, " but you're twelve!"  and "how many times have we been over this?" and then after a few days of this- i remember.

i remember that i've forgotten. her struggle. the global, pervasive, never-endingness of it.  i forget it's not grown out of.  it's not fixable.  it's not going.  i try to remember that it's not broken, but different. 

i go back to places i've been- the basics.  i go to the nvld website.  i read the list of challenges she lives with each minute.  i am reminded of how she didn't ask for this- that the way her brain works is not her fault.  that she actually copes very well given what she's dealing with.  i am humbled, deeply.  and then i become very, very sorry for my deep wrongness.  my impatience.  my inability to get it through my thick head.  the harm i cause by my lack of holding the tension of the opposites.  the tension that it can be a really good week- but she still has trouble regulating- that we can have no meltdowns- but her brain still struggles to get the buttons on her shirt matched up and through the holes.  that there is no wobbly voice but the steps to get ready in the morning are hard and take oh so much longer.  that not getting upset about someone sitting in your seat doesn't mean that you are not overwhelmed by the noise and number of kids and chaos of sunday school.

the list is long.  life is long.  and it feels longer when you don't move past certain check points that you'd expect you'd have move past by now.

and it feels longer when you don't know what you're hoping for exactly. 

it's like hiking up a mountain with no sense of where the top is, no idea how far you've come compared to where you are going.  so it becomes hard to know how to pace yourself.  once in a while you catch a glimpse of a nice plateau and so you run to it- only to be fooled- and the mountain goes on and on. 

mike can live in a place of just choosing the pace that works for him.  he settles in to the weight of his pack, the rate of ascent.  he doesn't need to look back or look forward except to make sure he won't stumble.  he's accepted that we don't know the height of the climb.  i envy this to my core.  because everything in me screams to know- how far? how much longer? what are we to expect? do we have enough water? or food? have we really come this far? what if we fall?  what if we get blisters?  what if we get so tired we can't ever reach the top?  what if the top stinks!  what if there is no view and it's so high that nothing grows up there and it's all dirt and rock and the clouds cover the perspective we'd have? 

the thing is, i'm not getting off this trail.  i'm not leaving my pack, and i can't go backwards, so what are my choices?  i need to settle in.  i need to find my pace- get used to the weight of my pack.  i need to trust in the God that made her and loves her more than i do.  i need to lean on my God of small things.

and i need to hope for the most amazing view ever.  but climb with my eyes wide open so i don't miss the beauty and the passion of life on the way up.