May 11, 2010

RegRETT Syndrome

To the chagrin of tomorrow's self, I owe it to Nora to open the doors for a minute tonight.

Tonight we went to the painter's house, had dinner, and stayed late playing games. It was pushing 11pm by the time we got home. Coen was fast asleep and there was much to carry in. The snow was falling steadily (in May!) and the ground was a muddy mess.

Kristy headed to Coen's room with our sleeping adventurer. I carried our stuff in and went back to the cold, semi-dark van for my little Rett girl. As I slid the door back, the lights came on and lit up little snow flakes that drifted down to melt on her cheeks. She smiled the biggest, crinkly-eyed, toothy smile at the snow and her daddy and snuggled up to my shoulder in the short, cold trip to the house. There was no accusation in that smile.

I thought about her hopping after the other kids all evening, nobody playing with her. Her younger brother keeping up with Haley and sharing toys and laughing together. Nora, content just to be around the others. While mommy and daddy had fun with their friends and brother played with his friends Nora explored, alone, a world she can barely interact with. Later, while she enjoyed her bottle of warm Almond milk, warm drops replaced the chilly snowflakes on her cheeks as daddy's regret and guilt overflowed.

I wrote these verses for Nora shortly after we found out she had Rett Syndrome. I don't claim that they are good but they are inspired by a little girl who can walk through walls.

My little tree, in verdant grove it grew.
It seems that nature dealt a loser's hand:
For though the trees around stood tall and true,
mine struggled to survive upon the land

To other trees, new growth was easy play.
For mine each tiny branch was hardly won
It pained to watch the struggle every day,
but joy, we shared, at trials overcome.

Surrounded by the tall, the strong and free,
my tree, both sparse in leaf and frail in root,
may not produce in size or quantity.
Yet still, it grows the sweetest kind of fruit.