Feeds:
Posts
Comments

Posts Tagged ‘gratitude’

Last night’s full Supermoon was so pretty;  I love astronomical phenomena – I’ve always wanted to see a full eclipse of the sun, for instance, and I’ve traveled miles into the Adirondacks to see a star-splayed sky unlike any you can see here near Albany.

So I stared at the Supermoon and thought about how it hovers so close this day to our world, to Japan, and Libya, and everywhere on this earth where children, especially, face tragedy and war, or are alone, orphaned by disaster, or so hungry their eyes lose the spirit that lives behind them, or existing in terrible places where they face neglect and abuse and God-knows-what.

And then I thought about Jonah, and our situation, and this blog…how I bemoan my actions and choices, how I dramatically describe despair, how I am so very afraid or angry and frustrated – how I feel envious…resentful…depressed.

How microcosmic my life has become.

And then, looking up at that moon, something opens up inside me and I feel a gratitude pour into me that is genuine, humbling, and strangely unsettling.  The events outside my own tiny world are colossally huge, and the vastness is overwhelming, as inconceivable as the Supermoon, so much more so than my own worries.

I live in a state where free care is provided to my aggressive, innocent, uncomprehending son so that he will have a chance to live better, and happier – with access to a place that will provide 24-hour consistency, routine, ritual, and nurturing to him.  And I complain about this because I hold fear around me like a blanket – because I am selfish and want him close at hand – because I allow myself to entertain the notion that somehow Andy and I didn’t do enough, soon enough, right enough, to prevent this.  Because I am wrapped inside my microcosmic universe.

I feel stupid and self-interested – and soul-tired too.

So this entire rambling post is just to say that I realize I am lucky.  Fortunate, blessed, whatever you want to say.

A lot of it is because Jonah’s father Andy is both devoted and resigned to the way his daily life unfolds – that it’s more difficult than I can imagine, that he is stronger and better and kinder than he knows – that he deserves so much more than this life he is enduring right now.  I see how much he is hurting, how tired he must be.  On my best days I can’t handle Jonah for half the time he can, and that’s with help.

I hope Andy gets the life he deserves, for he is smart and good and self-deprecating.  He is the nicest man I ever met, and probably the nicest man I’ll ever know.

Yes, Jonah is lucky.  And so am I.

Read Full Post »

“Pinned down in this heaven
I’ll die a thousand times
Aware of the damage ahead
I’ll leave the pain behind

Another day, a perfect day
A twinge of pain, the sting of the needle
Staring at the walls provide
A brilliant sight through eyes of the needle

So warm at the bottom
Warm never felt so kind
And for a moment or two
I leave it all behind…”

Perfect by Guster

If I were a superstitious person I might refrain from the kind of optimism I’m embracing, but Jonah’s had two-going-on-three pretty damn good days and my relief is palpable.  The new dosage of Risperdal (along with weaning him off the Clonidine) seems to be both buoying his activity and decreasing his aggression.  He smiles and plays again, giggling at some silly musing.  He babbles to himself in the bath again, inventing songs, swishing the water around, singing snippets of Guster and the Beatles…

He’s the child I almost forgot was in there somewhere.

We went to my mom’s today, where he greeted her with a big smile and she damn near broke down crying with joy.  “Oh thank God,” she said.  “Thank you God.”  He played on her stairs and requested “outside,” where he sat on her brick steps, smiling at the sun.

I’m a little cautious to enjoy this too much for fear of it all crumbling, but I can’t help it.  I know it leaves me more vulnerable to an emotional crash if he builds up a tolerance to the new dosage and gets all aggressive again.

I know he still has two attacks a day or so at school, and I know he is still mostly riding around on the scooter there, wearing a weighted blanket.  I know the triumphs of participation and breakthroughs of smiles are still few, but they’re seeing them at school every day.

I allow hope to prevail, risk of disappointment be damned.

Read Full Post »

« Newer Posts