Tuesday, September 4, 2012

Of course, we all work. Mothering is work. The daily demands of tending to children, managing a home, balancing a life of one’s own, nursing our intimate relationships…it’s a whole lot of labor.

But, when you have diabetes, or when you are raising a child with autism, the work is unending. The ebb and flow of task-to-rest is replaced by an invisible effort that eclipses each moment of each day. 

There was a time when I would simply head out the front door, hop on my bike, and ride. Now, I first check my blood sugar, eat enough to elevate it for the work I intend to perform, and carry a bunch of supplies that serve as ever-present reminders of my condition. When I tire, I wonder if I am simply weary or if my blood sugar is too high? Too low? I must check, and then again.

At the office, sitting behind my desk, head hurting and nauseous, I give myself my sixth shot of the day and then continue with the stack of papers and charts in front of me. My colleague only sees the work in my hands, and not the work of controlling my constitution. I’m always adjusting the thermostat of my body, always working to find a place of equilibrium amid a myriad of variables.

Likewise, my son is perched in the doorway of his own mind. It’s my job to help fling open those doors to the world, so that we may see his thoughts and ideas and he might find a way to interpret the space around him. Not only do I at times feel the pressure to interact with Henry every waking moment, but I’m trying to interact with a child who often does not want to be interacted with.

Henry is seated on the floor across from me, waving a wooden ladle in circles. He has taken voraciously to this particular utensil, toting it to the store and to school and the park.  Staring at the wall before him, he chews rhythmically on its handle.  He’s been doing this for five minutes, with no indication of stopping.  I could try to redirect him, engage him in something else, offer to play a game or read a story.  Instead, I sit down next to him, and playfully gnaw on the other end. Henry laughs, and then waits for me to persist. We laugh some more.  I find, for the moment, a pathway to an invitation, and the opportunity to really be present with my son.

Raising a child who has obsessive thoughts and who verbalizes them constantly can be truly exhausting. Standing at the ice cream counter in Whole Foods, I watch as Henry dissolves into a screaming, wailing mess. In the display case, there is one solitary, empty ice cream bin. I try to obscure his view, but it is too late. The vacancy is unsettling to Henry, and so, gently, as I try to calm his tears and hold the fists striking my legs and back, we leave.  And then, having breakfast with my friend LeAnn, Henry spots a bin of children’s toys. He goes over to investigate, and finds a tiny child’s computer. His fingers push the buttons anxiously, waiting for the electronic voice or the lights or sounds he expects to elicit from the device…but he gets nothing. The batteries are spent. Again, he cannot cope with the unmet expectation and I find myself holding my son as he sobs uncontrollably, his head buried beneath his shirt like a tiny turtle.

Some days, I find myself relentlessly trying to navigate the world while walking on ice no thicker than a sheet of nori. Other parents see us simply go to the park, but I have to make certain we walk the right path, in the proper direction, passing the oak tree and stopping for acorns. If I disrupt the routine, I risk the torrents of emotions that I cannot beckon back from the shore. I have to sing the same songs in the same order each night, no matter how weary I am from my day, so as to induce sleep and avoid the anxiety that robs Henry of his calm. While my friends simply see a lullaby, I am doing the work of making peace. If the forecast calls for rain, I must email Henry’s teacher in advance, warning her to put on his galoshes. What looks on the surface to be an act of overbearing and well-intended maternal love is actually a pre-emptive strike. Should the cuffs of his pants become wet, Henry will simply strip off the offending pants, and walk naked.

There is never a moment of my day when I am not on alert.

The experience of always working for your body and your child is exhausting. Most days, I don’t do it so much out of necessity as I do out of love, and the belief that my son is – like all children – a miracle. I’m grateful to be a part of raising the marvel. I remind myself, too, that  while it can be exhausting and is not without struggle, my son and I are healthy and happy, and have it in many ways better than so many we know. Still, I confess that there are days when I remember what it was like to live without the work of each second, and I miss it.

So, I did what any thinking person would do: I scheduled a vacation. I decided to send Henry and Midori to a ski camp in January designed specifically for children with autism and their siblings. Of course, I will be taking diabetes wherever I go…but it will be a welcome source or renewal nonetheless. A little less work for a few days.

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