Wednesday, September 7, 2011

Just Breathe

My boys, Simon and Will, started back to school this week after a quiet and uneventful summer. Friday night after supper I thought we could go get some ice-cream as a treat.

While I cleaned up the kitchen, my husband was relaxing and watching the news, after a full week of frustration at a job that does not deserve his many talents.

The kids had been playing outside, riding their bikes and scooters, hide-and-seek, frisbee, whatever ; trying to squeeze the last delicious drops out of summer.  When I went to get them, however, the street was now deserted. I asked their father if they had asked permission to go to the park or to a friend's house, but he said they had not.

So I set out for a walk around the neighborhood to find them, thinking at each corner I would meet them, or hear them laughing down the bike path, or spy them across the soccer field at the park, playing on the jungle-gym. No such luck.

Meanwhile, as I had been out looking for about 45 minutes, my husband was calling around to 4 friend's places, but the kids were not there either, and there was no answer at the 4th house. It was starting to get dark.

We got in the car to go search some more. We left a note and told the girl next door that if the boys returned, we wanted them to stay put.  Anyway, after driving around a bit frantic in the dark, and getting more worried and angry at the same time, and stopping people to ask if they saw the 2 little freaks, we returned home, relieved to find them standing on the corner waiting for us.

The oldest, 11, was crying and saying  how sorry he was. The youngest, 8, was trying to blame his "big brother", who is actually about 6 inches shorter than "little brother". Apparently, each thought the other had came to tell us they were going with a buddy who had arrived on his bike, unbeknownst to us, and whom we had not thought of calling. This friend has Asperger's syndrome, and thus does not always have the best judgement in social interactions.
A good lesson on clear communication for all involved; something we parents are still working on.

The real problem is that our oldest has Duchenne muscular dystrophy, a degenerative disease that will progressively see him become a quadrapalegic as each muscle of his little body gives up. We try to balance Simon's current sense of freedom and respons(ability) with his safety.  We want him to experience these thrilling moments of adventure while he still can, as one day he will surely be dependent on others for every activity of life.

All the talk in Buddhism about breathing makes me laugh with the irony, as Simon will most likely have to make the decision to be hooked to a respirator in order to continue living into his 20’s, his very manhood.  

Just breathe ... indeed.

I don't tell our story to make anybody cry, as I rarely do myself (anymore), or for sympathy. It just puts things into perspective for me, and helps me to think about others who are struggling in all the multitude of ways possible. I think my husband and I have always been the type rooting for the under-dogs of this world.

I worry that Simon won't experience the great joys of life, like the love of a romantic partner, getting his driver's license, or being a father to his own kids. I am scared of rejection by his peers, not feeling like a worthy member of society, unemployment, depression, etc. You name it, I worry about it. That's just my Mother Nature, for both these children who had to be cut out of my body in order to be given up to this world.

At the same time, it allows me to appreciate the immediate little joys of the everyday, like learning to ride a bike without training wheels, or listening to him laugh his uncontrollable and infectious laugh at a silly movie or at Jackass stunts, or enjoying a tasty peach with the juice running off his elbows. As nasty as his disease is, I feel it is important for him to know about the hardships others face, such as drought and famine, abuse, accidents, illness, war... Maybe we go overboard sometimes. I know I go overboard sometimes.

We are learning to "not sweat the small stuff", or trying, anyway. We are all stumbling, falling and getting back up to expose our bruises to the next punch that life throws our way.

I find that breathing gives me the time needed to find my patience. Somedays it is really buried deep. And I agree with my poet friend John O. , that it's easier at times to have patience for other people's children than it is for our own, I guess due to expectations and how it reflects back on us.

Just breathe...


  1. ... from Richard Burnett Carter...

    All things born of causes end when causes run out;
    But causes, what are they born of?
    That very first cause — where did it come from?
    At this point, words fail me, workings of the mind go dead.
    I took these words to the old woman in the house to the east;
    The old woman in the house to the east was not pleased.
    I questioned the old man in the house to the west;
    The old man in the house to the west puckered his brow and walked away.
    I tried writing the question on a biscuit, fed it to the dogs,
    But even the dogs refused to bite.

    (Zen Master Ryokan)

  2. Hi Andrea,
    You have a remarkable talent. I think you should forward this blog to Reader's Digest or another magazine. Your words come right from the heart. I had a similar incident happen in Chateauguay. Devon never wandered off, but one day he was on his bike in front of the house when a neighboring kid offered a popsicle. He went AWOL for maybe an hour, during which time I went blank trying to remember what he was wearing. I broke into tears when he showed up, and he wasn't even missing for long. Take care,

  3. Thank you for the comments. It sure ain't easy baring our guts to the world, even if its to just a few on-line.

  4. Andrea, I agree with Audra, you really do have a talent. I had already noticed how good you were at telling stories but didn't know that you were this good with words. I read all your entries and really appreciated each one of them. I wish I was half as good as you to be able to write appropriate comments to each one. But all I can say is thank you for sharing with us.

  5. Thank you Tamara, your comments are very appropriate and welcome. I appreciate you taking time out from your journey around the world to read about my journey within. Be careful out there!