When the nights are long and the days cold and cutting to the bone, I turn to the loving, sustaining words of my readers, some of who are strangers, but all of them friends:
The difference between the first journey before sunrise and the one you are on now, is that it was a shared experience to which we could all relate ... now we can only see through your eyes and feel from the depths of your heart and try to love you through it from a distance! Know that many of us are swimming along beside you each day, hoping to keep you afloat! XO
I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. What I have to offer isn't much, I have a brain that thinks about the meaning of things. I think about what it really means to be disabled. I think a lot about the relationships in our lives and what love makes us capable of. I think about what it means to be a parent. I think about death and grief and love. I think a lot about Calvin. I would be honored to correspond with you more. I'd love to join you on your journey, in whatever way that seems right. Please feel free to contact me. If not be assured that I am here, listening.
My background is in modern dance, and there is a technique codified by Doris Humphrey called "fall and recovery" - the idea of opposing forces of contraction and release, mixed in with the natural rhythm of the breath. I see Hailey recover from a seizure fall - with no tears, maybe no understanding of what has even happened, and I am awed by her strength and resilience. I sadly think sometimes it's better that she doesn't know. At 14 she is the strongest girl, and soon to be woman, that I know. I hope you and I keep recovering as we go through our own falls. I read your recent post about the bitter pill and all I can say is - I understand and I'm with you.
Yesterday at the end of the movie when your phone rang and you sprang from a boulder like a Momma lion (to quote Joni Mitchell) I realized again how close disaster lives to you, that any phone call, or some little bit of unusual behavior from Calvin and the dangerous dark specter of epilepsy is right there looming over you. But you are fearless and I am full of hope that the right tincture is going to become available soon and it's going to help. xoxo
I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other.
I've learned to never get in the way of a mad mother. Go for it full throttle and may the Force be with you all. My prayers and best wishes for you to get some sound answers to your questions.
You ARE surrounded by those who love you, and there are many out there who have traveled the same path for years longer, who know exactly what you're feeling, have shared your shoes. Sending you love and comfort and continued strength and courage.