Monday, November 14, 2011

To the Moon...and Back

“…you said “I am as constant as a northern star.”
And I said “Constantly in the darkness,
Where’s that at?
If you want me I’ll be in the bar”
— Joni Mitchell, A Case of You

An email I sent this morning:

            November 14, 2011, 7:35 am
            To: Just about every therapist and teacher J has ever worked with
            Subject: What J just said

J just jumped up from breakfast announcing:

Mom! I am going to the bath room, I'll be right back!

Then he did!

I wanted to share this to all of you who contributed to this moment with my thanks. It's a rough path when you don't know the way or the destination, but the guidance and efforts of all J's teachers and therapists has kept us moving forward, and increasing our goals. I am so grateful.

Shortly after I sent that email, we were running late to leave for school. I sent J to put on his shoes while I got my coat. A minute later I walked into the kitchen and found that J had dumped a pound of sugar on the floor. And he didn’t have his shoes on.


It is 9 am on Monday morning and I’ve flown in the stars and hit the floor again. I expect I’ll drop further down by the end of the day and maybe back up again. I spend my days at the end of a bungee cord, blindfolded, never knowing if I am going up or down, whether I might hit bottom or spring loose from the harness and fly.

My family and I are becoming increasingly adept at “rolling with the punches.” Mostly this is warmly satisfying. When I deal with some annoyance as just that, an annoyance—not allowing spilt milk or an attempt to make cookies solo or give the cat a bath to raise my blood pressure or reduce me to tears is proof that I am growing, getting better at this parenting / living thing. But last night, when J ruined my oldest son’s art project, and I complemented the older boy on responding so calmly he said, in his understated way “I’m kind of getting used to it.” And I had no satisfaction in it, only sadness.

While we have to learn to get used to lots of things that would send a “normal” family into a tailspin, we have more than our share of high-altitude joy that not everyone can understand. The moments we never let ourselves hope for, the events that we may have actually dreamt about, then awoken, crying, to know it was just a dream. Those times when something happens—something that may look insignificant or trivial to an outsider, are the times when we know that there are blessings in having a special needs child, or in experiencing a loss, or in knowing for whatever reason that life is not always good; not always easy. And though there is still a tinge of bitter in that sweet, sweet moment, that bitterness is the foil that lifts the joy to a higher place. A place that makes me dizzy and is just a little bewildering and brings the realization—the reminder that, to quote Yoda (yes, I must) “Luminous beings are we, not this crude matter.”

Then like Icarus feeling the sun’s warmth at the same moment he realizes the wax is melting, I fall back down—to a somewhat softer landing—and by force of…what? Motherhood? Stubbornness? Hope? Something… I grab the broom and trudge on.

There are times, I know, when the highs don’t come frequently enough to fuel the plodding and the days become so heavy, it’s hard to recall that feeling of joy, those moments of transcending the frustrations and disappointments, the pain and the fear. This is the darkness we all, at some point in life, will struggle against. It’s why we all need support—even those who don’t know how to ask for help.

But today, I’m OK. I can still feel the warmth of that wonderful announcement, of being addressed as “Mom” by my child who didn’t call out for me until he was well past three. The sugar is swept up, and I push ahead with my day. The only thing I know is that I can’t predict how things will go, but if this day brings me down, I know I won’t stay there forever.