DBS is a Journey

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Looking toward the East Coast across Pamlico Sound

There is a corner out there.  You turn left and the brackish water curves this way and that.  Then you are in it.  In the sound.   My girls knew what “the sound” was.  We’d been going to the outer banks of North Carolina for a few summers.  They had looked out on it from a distance.  Driven beside it.  We’d driven over it – all the scenic bridges.  Seen it form the windows of the rental homes we’d stayed in.

But there was something about this time.  In the water, rounding the corner, the expanse of water suddenly surrounded them.  It took their breath away.  What looked exhilarating from a distance was terrifying for my girls. No end to the water.  No land in front of them.  The still expanse of water as scary as any monster.

Vast and foreign, they were overwhelmed.  Too much unknown.  My 4-year-old went into a panic.  She could not settle down until we were back in the winding canal. The big-ness was too much.

I’ve seen DBS first hand.  We’ve watched the ups and downs that our friends Lexi has endured for the past 7 years.  We have read about this since our boy was a babe, watched hours of webinars, read many articles.  We’ve seen the expanse ahead. But to actually round the corner and be in the water?  It’s honestly more than a bit terrifying, and challenging.

It’s no small amount of water we’ve just paddled into.

Settings are tricky.  Programming is complicated.  Pain, frustration, fatigue, they come and go and it’s going to take time.

When the was first turned on it seemed okay.  But then it wasn’t.  Our boy was in pain and of course he couldn’t tell us what any of it felt like.  But at 4 in the morning after a night of moaning and tossing,  my husband and I decided that we had to turn it off.  Tears piled in my boy’s eyes in those wee hours of the morning.  I saw a different pain in his eyes, a fear that this was all not worth it.  Perhaps this was it.  We were able to explain that this is trial and error, that it won’t always hurt, that we will keep trying to find settings that work for him.

Today started rough, but turning the thing back on and tweaking settings was very encouraging.  He had perhaps his best PT session ever this afternoon.  Calmer body with some intentional movements.  Hard work.  Lots of hard work, and really good work too.

It’s an unsure first paddle into the expanse, but we are not alone.  Never.

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the beach 2014

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