I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes. ~Jean Vanier, founder of L’Arche

Two weeks ago, I came up wit ha new title for my, yet to be written, family memoir.  The title of that week was Holy Hell.

I come up with a new title almost every week as a way to entertain myself.

Also, naming it helps me make sense of whatever our life looks like that week and how it got that way. This is helpful because our life looks about as similar from one day to the next as a town before and after a giant tornado.  A couple people have died, our house is a complete wreck, and my hair is more than a little messed UP.

So, Holy Hell.

Holy, because caring for sick, dying and special needs people is holy and sacred work.

Hell, because caring for sick, dying and special needs people is hell. Or at least it feels like hell in my limited, self-centered, wimpy little brain.

We are grateful for the sacred, holy, ground: for being with our parents as they lived out their days and during their deaths; for having Amy in our life and witnessing a pure spirit; for the laughs we have every single day; for the perspective of how much we have been given and not earned; for the chance to dig deep, to feel grit, to embody our essential values.

At the same time some parts of it are a giant pain in the neck and sad and maddening and, at least to my limited, self-centered and wimpy little brain, nearly impossible.

I made my own emoji a while back when my mom was still alive.  I’m sure I’ve texted it to each and every one of you at some point this year.

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Because at times a pin in the eye would feel better than this stuff.

If you see me coming, don’t listen to a word I say because living in my little Holy Hell has done to my brain what we did to those frogs in Biology 101 at KSU — stirred their brains with a needle right before we dissected them.   Remember how their legs kept kicking and stuff even after you stirred their brains?  That’s me right now.  Ick.

It is getting better though.  I thought it was stressful circumstances that were contributing to the feeling that I might suffocate and die.  I think now it may have just been heat and humidity.

We’ve had three days of relief from the hell of late summer weather in St. Louis and the fall air has breathed new life into us: this weekend I felt so good, so peaceful that I couldn’t even remember what stressed me in the first place.  (Keep in mind my brain has been stirred and my memory was a tad bit affected by that incident.)

Actually, the real reason we’re feeling like fresh air has blown through the house is that we have connected with an organization called L’Arche.  They are providing some care for Amy in our home on a daily basis.  Their organization is founded on the philosophy that living in community with special needs people is beneficial to everyone.  I can not say enough about this organization and the people who choose to live and work there.

The people of L’Arche around the world do not shine light on the hell side of being in the company of people with special needs, in any way.  Quite the opposite, actually.  This organization is full of holy people doing holy work.

In thinking and talking and praying about the side of this that feels hellish, I’ve realized that the Hell part of my story is all me.  It comes from lingering on what has been lost, given up, or changed. It comes from focus on things that are tightly or loosely bound to the material of this present life.  It comes from insecurity.  It comes from delusions – delusions of perfectionism, control, and the notion that aging will give us peace and wisdom but not saggy skin and a jelly belly.

Once again, when life is all stripped down, just as it is in sickness, death, and special needs people, it is all holy.  Our life is full of abundance, luck, good fortune and health.

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I’m afraid it’s always going to feel like a bit of heaven and hell though, as long as my little brain, my whiny mouth and limited heart are involved.

I am grateful for experiences that help shine a light on the holy and for times when the hellish stuff seems tiny, or better yet, funny.

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Love.

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