Kaleidoscope

I’ve always been fascinated by kaleidoscopes.  Turn the tube one way and brightly colored glass particles create a gorgeous, perfectly symmetrical array of brilliance.  Many, many moments with my son are like that —dazzling; the colors almost hurt my eyes they are so intense and the pattern so beautiful.  Occasionally, if we’re lucky, we actually [...]

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Antithesis

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher
After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  [...]

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If the shoe fits…

The shoes should have been our first clue.
After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always [...]

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On Letting Go

Apparently, I am not the only one in my family with issues of  letting go.  (I feel compelled to add, for the sake of clarity, that my issues are not akin to Nik’s!)
We saw Nik’s beloved Doctor Mary this afternoon.  It’s true, she is beloved; she is the only doctor Nik will ever fully —and [...]

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Detritus

Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize.  The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place.  The loose ends, the question [...]

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If you give a boy a cookie

Yesterday was an intense day. Too many appointments, the prospect of lots of lab work for Nik, and the question mark about whether or not he did, in fact, have a rotavirus. You know, just another ordinary day in our lives.
We had a great appointment with a new doctor, an allergist, to help us make [...]

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Update

Thank you to all of you who weighed in on my last post about our dilemma. When I wrote that post, we had not yet hit the proverbial wall; I didn’t know the behaviors would get even worse. The first night of the medication —only two doses given at full strength —left Nik in a [...]

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Sophie’s Choice: Special Needs Version

In the history of unpalatable decisions, there is (are?) a host of fine examples: Sophie’s Choice, Scylla and Charybdis and Morton’s Fork to name just a few. To this panoply of dilemmas we can now add “Nik’s Nightmare.”
Here it is:
Is it better to have your child wake screaming in pain in the middle of the [...]

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"Static Quo"

I’m trying hard lately to see the glass half full instead of half empty. But when my tank of sleep is running on fumes, it gets difficult to see past the haze and fog of sleeplessness and worry. In spite of getting some decent sleep last night —courtesy of a new prescription we tried with [...]

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Luna

His cries echo in the darkness; the witching hour has begun again. Each night it’s the same routine; he beckons with his plaintive cries as he bangs his head on the side of the crib. Some nights it’s as simple as soothing him with a touch —a gentle rub on his back, a firm pressure [...]

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