Small steps…

The anniversary of the first moon landing came and went again, with that epic fast food drive up sound of Neil Armstrong’s great quote,

On the Fountain family planet, we had some steps small and great.

Ensign TimOur older son completed the big step of graduating from US Navy Officer Development School.

As you can see, Melissa and I were able to fly out to the East Coast for that (well, you can see Melissa – just imagine me holding the camera, OK?)

In another step, seemingly small but maybe a whopper, the trip was possible because Joey spent three (count ’em, 3) nights in a respite apartment.

Yes, it would have been a bigger step for Joey to go to this big event in his brother’s life. Except that Joey is a good traveler and a lousy “arriver.” He likes long car trips and airplane rides, but he hates hotels and as soon as we reach a destination, he’s saying “Go back to Joey’s house.”

So the next best thing is for him to be in a good place that allows the rest of the family to take some steps together, and this happened.

It was his longest overnight stay to date, and he came out of it his happy self instead of disoriented or agitated like after other overnights he’s had.

The staff kept him involved in fun activities. He made it to Sioux Falls’ big annual Jazz Fest.

He went to the movies, and was able to tell me that he saw Disney’s Frozen.

He went out to eat, and was able to tell me that he went to Burger King. He also echoed a debate that he appeared to lose about the fast food choice, imitating a staff member saying “We went to Taco John’s last time” over and over. I guess that’s a better way to process defeat than hitting people or breaking things, or even going around in a mood.

So, several days of “steps.” Pretty much all of them good, no matter how big or little.

We just saw Maleficent

maleficent movie billboardWell, Melissa and I snuck a matinee date to see this hit movie. Our son with autism was at his day program. Bad parents. Very bad. But I think we made the right call.

Spoiler Alert * if you haven’t seen it I’ll be describing stuff in the movie * Spoiler Alert

First off, Maleficent is a much reimagined telling of Disney’s Sleeping Beauty, with which many of us grew up. At least some of our kids on the autism spectrum have committed that version to memory – so see it when they don’t have to go with you. You know they don’t like too much change, right?

There is plenty going on in the film, but I’ll highlight just two themes that stood out as relevant for care givers:

1) We have to choose what’s right when our accumulated hurts turn us toward bitterness. Maleficent and King Stefan wound each other. Both face the choice to let insult and injury define their lives or to choose a better path.

Care giving brings its share of hurts. We can feel cheated by life, especially by those closest to us; shortchanged, insulted, betrayed – and such feelings can raise up emotional barricades of anger, resentment, cynicism and despair. Maleficent and Stefan hunker behind walls of stone, iron and thorns, dwelling on their hurts and inflicting them on those who come close.

The beauty of the movie is a choice to stop stewing in the hurt, to leave the past in the past, to act for the good of someone else and to take down the barriers that have loomed for too long.

2) Love is a sacrificial embrace of reality rather than fantasy and romance.

The story of Sleeping Beauty turns on the hope of “true love’s first kiss.” This is, of course, a “love at first sight,” romantic kiss in most tellings of the story.

But Maleficent takes this in another direction, in which the kiss is not about romance but about a movement of the heart that makes one person put their own agenda aside for the good of another.

This is at the heart of care giving. We deal with the death of fantasies about our loved ones’ futures and the ways we felt entitled to enjoy them. We have to lay aside the warm fuzzies we crave, and dedicate our efforts to our loved ones with special needs, on their own terms.

Those who can offer this “true love,” the movie suggests, will find broken things healed and new paths opened up.

Those are hopes worth holding after the credits finish rolling.

Deep thoughts in the hospital hallway

“…you should run a thousand miles from such expressions as: ‘I was right.’ ‘They had no reason for doing this to me.’ ‘The one who did this to me was wrong.'” Teresa of Avila, “The Way of Perfection” 13:1

Melissa was kind enough to get me a volume of this 16th century spiritual guide’s writings as a birthday present. I’ve not wanted to put the book down.

Teresa encourages people to seek love, detachment and humility as virtues. I’ve been most taken with (and challenged by) the idea of detachment, which is reflected in part in the quote above. It’s about letting go of our desire for life’s comforts, honors and other things we’re wired to crave.

So today I made a trip to visit someone in the hospital. There was a nurse in with the patient when I reached the room, so I smiled and nodded and backed out into the hallway.

Then another nurse came in. Then a Physician’s Assistant. And a dietitian. And the nurses kept doing this do-si-do thing in and out. Each new person smiled at me and said, “I’ll be just a minute.”

This went on for at least twenty minutes. I was anything but detached from the discomforts of the situation. I was bored. The hallway had no chairs, and I alternated shifting weight from foot to foot, leaning on the wall and pacing. There was no coffee pot, and I get grumpy when I’m asked to stand by and I’m not offered coffee.

Worst of all was the feeling of being irrelevant. The bottom line was that my visit wasn’t seen as that big a deal. The real care givers were the ones going in and out; my contribution, if I even had one, could wait.

Somewhere in the midst of being dissatisfied and feeling insulted, more of Teresa’s words about detachment popped into my head,

Does it seem to have been right that our good Jesus suffered so many insults and was made to undergo so much injustice?

I found myself chuckling inwardly – at me. How quickly and easily I become the center of the universe. My mind is like sharks in a feeding frenzy, gorging on every floating bit of anything that seems unfair or insulting or an affront to my dignity.

Maybe years of care giving have made me more prone to hear the things that Teresa warns against. “It’s unfair. I’m doing my best and nobody seems to care. My effort matters and should be noticed. There should be some attention and some reward for all this.”

I remembered the report of the dinner party where the host slighted Jesus, and the only person to honor him was a woman who was held in contempt by all the guests,

Then turning toward the woman he said to Simon, “Do you see this woman? I entered your house; you gave me no water for my feet, but she has wet my feet with her tears and wiped them with her hair. You gave me no kiss, but from the time I came in she has not ceased to kiss my feet. You did not anoint my head with oil, but she has anointed my feet with ointment. (Luke 7:44-46 ESV)

I realized that I was standing in a pretty holy place there in the hallway, sharing space with Jesus-the-Irrelevant. In fact, he was honoring me in the way the despised woman had honored him at the dinner party, bowing down to cleanse and anoint my thoughts in a setting where I didn’t seem to matter all that much.

Detachment isn’t about ceasing to care. It is about caring more for what’s true and right – about God and neighbor – instead of obsessing about myself. That’s a worthy spiritual path for any care giver.