Last week, I had the pleasure of getting in the water with a beautiful, young girl affected by Rett Syndrome.
Rett Syndrome is a rare genetic disorder that affects the way the brain develops and occurs almost exclusively in girls. Over time, children with Rett Syndrome have increasing problems with movement, coordination, and communication that may affect their ability to use their hands, communicate and walk. When the going gets tough...the tough get in the water.
The 30-minutes I spent with J. in the water were some of the most exciting and beautiful minutes of my life to date.
As I held her in the warm pool, her head on my shoulder and my hands supporting her ribcage and hips, she began to unfurl slowly like a fiddlehead captured in time-lapse. Each breath encouraged even more relaxation of the muscles until her toes almost touched the far side of the pool (How had I not realized how tall she was until now).
Before long, she began giggling; her joyful chest reverberating against mine until I was laughing too. We passed laughs back and forth, swaying, stretching and opening. J. giddy from the freedom and sensation of flying, perhaps? And me, with the joy of being purely present with another. No agenda. No attachment.
Another breath comes along and with it a BIG stretch, only of the arms this time. Up over her head and around my shoulders and over my head. (I wonder how she feels right now. I can't see her face, but I'm reading other cues. The nurses on deck I'm sure I can see, when I remember to look at them; they are alternating between smiling and tears) J.'s arm draws back towards her body--slow and smooth--but when she reaches my cheek, she pauses, cupping my face in her hand. Such vast sweetness in this tiny hand, this tiny pool, this tiny town.
Bringing my hand to meet hers, she coos so I hum and we dance a little together here, although it's not a song I can name or recall. And it's this scene I have remembered, here or there throughout the week; with the dog crying for breakfast as I lay in bed and the sun begging me to be productive, I see her face. I feel her laugh. I hold her hand, again and again. I remember J. as I kick off the sheets and begin another day.