When Maxwell was little, smaller and younger than he is now, he came almost everywhere with us. He was very agreeable in that he was portable, cute, and never really "said" much. Before we had our third child, which complicated our family merely because we two adults were now outnumbered...the more atypical challenges we faced as a family were relatively imperceivable to the outside observer. Maxwell appeared quite typical. Most people had no idea that there was anything ary when they would stop to tell me what a lovely face he had. It was in this way, early on that my tightly held expectations for our life as a family could be maintained. There was nothing extraordinary about what I thought my family would be like. These were expectations that I felt I deserved to have and I was not going to give them up like desperate prayers in a storm...so off I stubbornly went into Max's childhood with my husband Christian right behind me.
We took hikes in the hills near our home together with Max in a pack and his big sister on foot. We went out to restaurants, (the noisy ones were best), for dinner together after feeding Max at home first. We went to the library to pick out new books while he slept in the stroller and we vacationed at the beach without missing the sunsets...I was determined to keep our family from being fractured by Maxwell's disability. All the while, I was also sure that my husband and I were the most resourceful people on earth and that we could just continue our "improvise and adapt" strategy for the rest of our lives. Surely I thought Maxwell's quality of life was better for it and our own quality of life was being maintained...or was it?
Well, I have learned that there is a good reason for the common saying "when push comes to shove". Unless you have completely mastered the art of mindful meditation which I haven't, when you push long enough and hard enough against any obstacle, real or imagined with limited progress it usually results in an overwhelming desire to shove! Shoving anything, including a stroller with a 40 pound child in it up a set of nature trail stairs (swearing the entire way - how dare they use logs and call them stairs in the forest!), because you are trying to treat your family to the calming and healthy effects of a hike in the great outdoors - is generally not good. It was a lovely fantasy while it lasted.
Maxwell is four and a half years old, and thanks to our family's double dose of Viking genes, he, along with his two sisters are simply put: large. Not only are the physical limitations becoming more difficult and my chiropractor visits more expensive, but as it turns out, Maxwell's idea of fun has evolved and become more specific too. Like meeting my expectations face to face in a too-narrow hallway, the realization that Max does not prefer to be with us over his own familiar routines makes me uncomfortable, yet feel weirdly less guilty about leaving him in the capable hands of another while we leave the house or watching him hang upside down from the seat of the living room couch for a half an hour at a time. This doesn't mean that this mother's fantasy about life with her family is completely dead, but it does mean that push has finally come to shove and it is time to recalibrate those expectations. Learning how to meditate first might be a good idea...
Sunday, August 7, 2011
What is it like to be Maxwell? I've been curious about this since he was just a few days old and staring blankly back at my face which in all likelihood was a contorted picture of confusion and grief. No fun for a newborn or anyone else for that matter. Sitting in the intensive care unit in the hours after he was born, I listened to a doctor's voice that seemed to be coming to me through a thick fog. They had a diagnosis. In the end it didn't mean much compared to the MRI pictures of Max's tiny newborn brain which, even to my untrained eye, didn't look the way it was supposed to... These were dark days. The days bled into weeks and the weeks into months, the act of coping stealing most of my conscious thought. The black clouds seemed to hang heaviest over my head in the beginning as I struggled with the powerful maternal instinct to nurture my tiny infant and the dry, painful knowledge that I was only sealing my fate as the parent of a special needs child. I was a mess. Maxwell was fine.
Max is deaf. Max is blind. Max has cerebral palsy. He doesn't worry about debt-ceiling debates or even watch the television. He doesn't believe in God or fear Mother Nature. He belly-laughs at his own jokes. He is patient with the way the wind feels on his face and the softness of a sheepskin under his fingertips. He is inspired to move his body in a way that pleases himself without any self-depricating thoughts of shame or embarrassment. He never diets. Max seeks out the sun and bathes like a cat in the mid-afternoon, soaking up the warm feelings and seemingly storing it away for later use.
Granted, it's not always so zen. Max's limbs don't always follow their marching orders, often leaving him frustrated and angry with a goal unmet. Expressing himself with regards to feelings and objects and people that he recognizes but cannot name must be unknowably maddening. But, like a soldier-philosopher he'll usually change the goal and carry on. The world he lives in can be unpredictable and surprising with unforseen touching hands, unexpected and intrusive objects, offensive smells and unpleasant tastes, all of which are disorienting and threaten the safety of what is thethering him to this universe - that which is familiar and according to his own rules. Max is indeed simultaneously the king of his universe and yet like a leaf on its breeze...