When your children are on the spectrum, you learn to see new colours. You find a pattern amid the disorder; mine is plaid.
Wednesday, May 26, 2010
Take these broken wings
I endured the most difficult conversation in the car last night on the way to pick up my husband from work. It was a tearful euthanasia/palliative care (gone wrong) debate, right in front of the dying patient.
G. had found a one-winged butterfly, which she was aggressively nursing back to health. (It wasn't working.) She'd it shake and poke it to try to make it move. Every time it wiggled, she'd report her clinic's success rate. Poor K. was beside himself.
K: "You're hurting it!"
G: "It moved its leg. Yeah, it's still alive!"
K: "It doesn't want to live anymore! Leave it alone."
G: "Oh no, it stopped."
K: "Finally, it's not suffering anymore."
G: "Wait, it waved again."
K: (in tears) "Ahhhh!"
We finally arrived at the office, where I insisted we leave butterfly among the flowers. G. said, "We can take care of other creatures. Right, mom?" All I can say is, with her kind of care, I hope insects don't have a lot of pain receptors.
Eugene Peterson writes, "Suffering is a character of the personal. Animals can be hurt, but they do not suffer. The earth can be ravaged, yet it cannot suffer. Man and woman, alone in the creation, suffer. For suffering is pain plus: physical or emotional pain plus the awareness that our own worth as people is threatened, that our own value as creatures made in the dignity of God is called into question, that our own destiny as eternal souls is jeopardized."
Remembering Scripture can be comforting in times of suffering. Verses like 2 Corinthians 1:3-5: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows."
Or Philippians 1:6: "He who began a good work in you will carry it on to completion until the day of Christ Jesus."
Lately the verse that's been in my mind is: "Help, God--the bottom has fallen out of my life!" (Psalm 130:1 The Message).
Not exactly one of comfort or completion. It is nice to know that someone else (although a few thousand years too early to cry with me over lattes) has felt the same way, but I'm guessing the writer's problem had more to do with being chased by lions or watching his children being carried off by marauders, than the setbacks of parenting a child on the autism spectrum.
For that I need to look around the table at my mom's support group. They know the fear, vigilance, discouragement, inconvenience, childcare issues, safety concerns, the stares, the home-school-doctor conflicts, the medical decisions (do I look like a doctor?), the frightening side-effects, the uncertainty about whether this summer's plans or independence (college? empty nest? grandchildren?) dreams will pan out.
What I like about Psalm 130:1 is that it's directed at God; God-given words to pray when I'm too tired to think up my own (but that fit my hurt like a glove). Eugene Peterson says this Psalm is "a powerful demonstration that our place in the depths is not out of bounds from God. We see that whatever or whoever got us in trouble cannot separate us from God."
No relief for wingless, Über-handled butterflies, but for the K.'s and the moms (and the G.'s in their own way) who weep over lost beauty, who feel the pain plus, who see the bottom fall out, it's something to hold onto. Even if it's only with one wiggling leg.
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