Today, I awoke to not just the cat meowing, but to the chirping of birds. I can feel it in the air, spring is on its way. And with it another month counted down, and one month closer to the HOPE I know is around the corner, just like spring. I see now almost daily, either post about girls who are in the NNZ trial or another trial, on their way or contemplating and trying to get there. So much hope in all of it. And yet, that is tempered by the struggle I also read about daily. Those girls in the hospital fighting for their lives, parents who are struggling to keep their girls healthy against the odds. Still, I am clinging to the hope that all the girls now will live to see the day when there is an effective treatment. And there continues to grow an optimism in the Rett Community, that I am happy to have been here for, happy that Katelin has been here for, that she was born in this age.
Rett Syndrome has turned like seasons within her. The regression phase, like fall, one by one the leaves of skills dropping and being blown away by at first a subtle wind and then the blustery one. Frantically trying to rake them into a pile and keep them from blowing away, denying that even as they fell, they were dead, gone, shriveled up and turned to dust in my hand. All the dreams I had for her as well, just blown away, and like a child I chased them and then in anger kicked them at my feet.
Oh, then the long cold winter. The storms that raged, the frozen heart sometimes melted by tears. That wasteland of nothingness. Oh there were lulls in the bitterness of this season. A smile cracked like a flower through the frozen ground, and miracles of miracles a word. But this season has clung with a tenacity that belies global warming, and it often seemed like an ice age-when I looked at the future, I only saw the same, cold hard facts of NEVER EVER EVER going to end.
And now, finally! It feels like spring is in the air. My heart is lighter, and the little bird of happiness dared to sing a song within my heart. And I can now believe the rain will have made the land and trees fertile and those leaves that long ago left the branches of my child’s mind may slowly return and blossom. And when that happens, I will take a while to lay below her radiant color and marvel at how green and full of life she is. I will marvel at the songbirds that will fill her with words, the words that will flow like dripping dew into my heart, and I will soak them up. I have yet to imagine summer, I dare not hope too much. Summer is a secret still within my heart.
But spring has always been my favorite season anyway.