Children

The little girl I visited this weekend, Evi's godchild, suffers from congenital muscular dystrophy. She was born with dysfunctional muscles, all of them, from the ones she can control, like the ones on her arms, to the ones she can't, like stomach. And of course, there's also the diaphragm that you can sort of control. She was born unable to breathe because the diaphragm did not work enough to catch the first breath. She was attached to a machine for months.

I wonder how parents deal with their children born with enormous challenges, for the children as well as for the parents. This little girl's parents work full time outside their full time job to keep her alive and afford her the best care possible. While her muscles are improving, they will soon begin to deteriorate inexorably. I am not only thinking about the value of life, but also about being a parent. I see my nephew running around being unruly or uncontrollable, at least for me, not sure about the his parents. And I see that at least he's a normal child with normal challenges for parents and for himself.

I watched the little girl swing her little arms and legs. She started to smile, a behavior requiring facial muscular movement. She will have trouble speaking, and learning to speak. There is a tube attached to her trachea as if she was some patient suffering from lung disease after a life-time of smoking. She was still a little child, having spent first half her life so far in the hospital. I looked at the mother, and I saw no room left for grief or worry, just constant flow of tasks to keep her baby alive and in the best condition possible. What does it mean to be a parent? Is it really for the process? Or is it also for hopes and goals, goals of bringing a human being into a normal, fruitful life. Perhaps, not normal.

That was the preoccupation of my weekend in New Haven. And they were also seeds of thoughts. I haven't really let them grow into anything concrete. It was also a long weekend spent with Evi, nurturing that sapling called our relationship, building a connection that is just starting. The exception was a couple of hours in my old tango haunt, the place here I spent most of my Sunday evenings until I started driving down to New York City to dance that day of the week. Most faces were new but a few ghosts stubbornly clung to the tree of time. But there were really just two friends, one was the Indian man I had mentioned a few times, the man who stopped talking to me because I dated his ex-girlfriend without telling him. The other was a woman I went to Montreal once in her car; we also went often to New York City to dance. I caught up with both of them for a bit. I sat most of the time on those familiar steps that divided the dance section from the section where food and water was available and people gathered. I was the one who baked goods and wowed people for a few years. I was the one sitting there being too afraid to ask a better dancer to dance with me. I was somewhere around being upset amidst some drama with some tango dancer. I was everywhere in so many moments of those five years of dancing in this hall.