Tuesday, February 23, 2010

Known World

In the evening after the first big storm that frosted the DC area like a big white cake, I took some time to go outside in the evening. Crossed the street to deliver a meal to a neighbor who needed it. Returning through the middle of the street, I paused in the knee-deep tire ruts left by the handful of four-wheel drive urban warriors who'd passed through. Looked up the street, looked down. Absorbed the pleasure of standing in the middle of the road, even though ours is not a busy street, without a worry or a thought about a car's approach. Streetlights made the snow glow in a blue-white haze settled over all.

The peace that follows 'disaster' of some sorts--perhaps the quietening of all inner voices, all the chatter layered onto our days, whether people or cars or planes or the freneticism of over-scheduling and task overload. All of that is tamped down under two feet of snow.

It was the same quietude in the days after 9/11, when jet noise stopped overhead. When I was afraid to leave everyone to go to the supermarket, worried about what might happen next and what might go wrong if we were separated even for an hour or two.

Locked up in our home, together, there seemed little to fear this time. The power was on. We had food. All of Robert's medical supplies were in good order. No reason to leave the house until the plow came--and even then, no reason to leave until the high-pitched hunting and gathering fray had subsided.

Calm. Until this winter, snowstorms in the DC area always provoked anxiety and fear in me. I thought of myself as trapped in the house, my child sick, his health always uncertain. What if we needed to leave and we couldn't? The isolation intensified the feeling of the abnormal, with access diminished to the typical.

As the snow has been plowed, pushed back into huge piles in parking lots, in front of sidewalks, at the corners of intersections, my daughter took to calling them the Alps. She was climbing the Alps and it became one of her favorite activities.

As we emerged from our snow-cocoon, reality rushed right back at me, as though a dam had broken. Scaling the Alps. Robert now weighs 78 pounds, and his weight continues to rise. Stabilizing him with the biotin has allowed us to up the volume of his tube feedings. His weight, stalled periodically for years at a time, has increased to that figure above from 63 pounds a year ago.

This is a problem. Despite the musculature I've gained from yoga, despite learning to lift, I'm pushing my own limits. Getting him into his car seat from his wheelchair is no longer an action that is routine. Wriggle one arm behind his shoulders and under the far arm. With the other, lift him under his knees. Shift his weight to the edge of his wheelchair seat by sliding him forward a bit. Brace, legs apart for stability, squat in order to push up with the knees. Lift, pushing my legs straight up. Step toward the car door, the sliding door wide open. Place my right knee on the floor of the van. Try to lift him up one more foot, at just about my shoulder height. Get at least one of his hips on the car seat to absorb some of his weight. One more mini lift and shift and he's settled in.

And now we're coping with the puzzle biotin itself has become--with its positive effects on his g/i problems, stabilizing those, its small additions to his motor abilities, but without much global change. The neurologists won't write a prescription for it, despite the fact that our insurer would cover it (it goes through his g-tube) and that it runs us just under $200 per month. Why? There's no data to suggest why it's helping, no medical rationale, no metric. But they're happy to let us keep giving it to him.

So now, for me, it's not so much any storm that bothers me. It's re-entering the world. The storm was stasis, the status quo, a comfortable lingering within boundaries I understood. The known world, to misappropriate a title of a novel.

When your child is undiagnosed, doctors 'break up' with you all the time. They reach the endpoint of whatever advice and treatment they have to offer. Then, like your last college boyfriend, they offer to be friends, always be there for you if you need them. Then they refer you to someone else. Which is better than just suggesting you should find someone else.

Our gastroenterologist was our one constant. He met with a terrible accident last summer and passed away. What he would viscerally understand about our struggles is now gone, uncommunicable to others. Who can interpret Robert now in the context of what has gone before?

I made an appointment with a new one to at least start the routine again. We will need that as we now have been
referred to a mito specialist in Cleveland. Because we live in such a large metropolitan area, I have never had to take Robert to see a physician or a specialist who lived more than an hour away from my house. We have been day trippers in the land of disease. In fact, the undiagnosed disease program at NIH is just a few blocks away (we haven't yet been--not sure we're ready for the high-powered test-repeat, full metal jacket protocol I know it is).

So now we will contact the doctor in Cleveland and hope he will see us. So much of what we have faced is unknown, but circumscribed within our known world. Storms might rage outside, but we are inside, within or just beyond the Capital Beltway, our footing slippery but the terrain secure.


Dale said...

Beautiful post, Jeneva. "Winter kept us warm..."

dylan said...

Jeneva, it's just wonderful the way you describe one dilemma after another by laying out the concrete details, but leaving all that generous airspace for the reader to feel the resulting emotions. That's the writer in me talking. You're quite a mom, too.

NightSwimmer said...

Jeneva - I find so often when I read here that I want to say something but I am so overwhelmed by the feeling of relating and by the beautiful starkness of your writing, that I am at a loss for words. The snow and the growing bodies of our sons- it has been a whole new planet, hasn't it? The same one, but a whole new one all the same...

erika said...

This is so beautifully written, Jeneva.

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