I couldn’t resist having fun with the sign on this shopping cart. I Instagramed (is that the verb?) it, with a caption about how I wasn’t getting any children anyway since I was fasting for Ash Wednesday.
Humor is an important ally to the caregiver. It is a tension cutter. Much of our humor is dark, but then so are the situations that generate it.
In recent months it’s been harder for Melissa and me to laugh at some of the quirks of Joey’s autism. His video watching becomes intrusive noise; I don’t think he’s turned up the volume but our annoyed ears seem to think he has.
The chores of his daily routines – chores we do for him, let me be clear, not chores he does – are not a terrible effort yet they are numbing. Not demanding physically, but draining psychically.
His non-cooperative behaviors get under our skin more.
We have more wistful conversations about being empty nest, about having the house and the time to ourselves for the first time in forever. And so we wait for Joey’s group home placement, still loving him and wanting all to be well in his life yet feeling the limits of our own aging and of the two decades dominated by autism.
And that’s followed by a mist of fear that we’ll be staring at each other across a great emptiness wondering, OK, now what do we do?
Speaking of aging, I guess that entitles me to repeat stuff I’ve probably said before but can’t remember if I did. So, let me say (again) that one way to describe raising a child with autism is to ask parents of typical kids to remember the sleepless nights and all the stuff that went with a new baby – the stuff that in hindsight becomes a source of humorous memories. Now imagine that much of that stuff never developed into self sufficient adulthood and you kept doing it for five years, then ten, then twenty. Not so funny anymore.
Remember that you are dust, and to dust you shall return, is what we say on Ash Wednesday. Indeed, care giving exposes every pathetic evidence of sin and fatal separation from God – every bit of selfishness, the limits of love, the capacity for self pity and resentment, the instinct to blame… all of the ungodly feelings, thoughts and emotions in service of the world, the flesh and the devil.
If we are fortunate, it becomes the great weakness that throws us upon the grace of a loving God, who gives us power to live in ways we never imagined,
Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. (2 Corinthians 12:8-10)