“The mind determines what’s possible, the soul surpasses it.” ~ Pilar Coolinta
Today is a big day.
Today one year ago my soul was put to work beyond any measure I could have imagined. Until then, my mind had been doing most of the deciding what’s possible. What E, could handle, what could happen, how she would grow and evolve. My mind told me that Q was an amazing gift and E’s forever partner in showing her what’s possible by not treating her different, by showing us that she is exactly as she should be. My mind told me that we were all set with minis and our family was complete and could not possibly handle more.
On October 1st, 2012, my mind went silent as I heard the words “it’s Angelman Syndrome.” I knew it was possible. I had asked for the test. But yet, all I could feel was, it’s not possible.
The world as I knew it would never be the same. It has never been completely the same….but that’s exactly the point.
I have written about that day more than once, because I can still feel every emotion that went along with the words in that moment and the minutes and hours that followed. The extreme sadness, fear, despair, anger, grief, burdened not my mind but my soul. It’s my soul that can still call these emotions up on demand. I feel them in a cool trickle that seeps from the deepest part of me. I cannot fight it. I can see the movie as it plays out in my mind. The last look on KC’s face as she closed her laptop. The strum ringtone of the phone. The genetic counslor’s words as they ring in my ears and my own polite and measured response. The look of nervous anticipation on M and G’s face. M’s swift movements around the large conference to hug me. The warmth of G and M’s hands, my very own angels, as we lay on a cushion tipsy on Whispering Angel trying to shut out the pain.
One year later, the only thing that I can feel even more deeply and that challenges the wave is the moment I look into the eyes of my dear sweet daughter E and I see her light. Her light and love for life. It is not her mind that knows these parts of her, it is her soul. The power of this love comes not from my mind, but from my soul. In her eyes I see that my mind cannot know what’s possible, only her soul can show me.
All around me lately are stories of sadness. Miscarriages, difficult diagnoses, even death. Situations I cannot imagine and yet even as my heart breaks for each of them, I have no words to comfort other than, I am here and sending love. As I listen, I always hear some combination of the trickle in their voice as their minds grapple with the reality and the fear of what’s unknown and next.
Last Thursday night, KSP and I were on the host committee for an event benefitting Angelman Syndrome. The money raised went to fund a fellowship in honor of one the deceased former researchers who dedicated himself to finding a cure for Angelman Syndrome. As part of the event one of the research recipients of the fellowship got up to speak about why she had dedicated herself to a rare syndrome. She talked about the happy demeanor of the children and how they try so hard. She outlined some of the challenges that the parents face. As she spoke, the trickle began to seep through me. I realized I often forget the reality. My mind sees what’s possible and what is. As the tears streamed down my face in front of some of our dear friends who attended and strangers I did not know, E’s face and voice appeared in my mind. Her bright smile. Her vocalizations. Her clear eyes full of comfort and love and I felt her presence. She was there reminding me how far she had come. How she had already surpassed what’s possible and had taken us all with her.
Today, is a new October 1st. The pain of the day last year will never go away, but I want to see the day now from the happy part of my soul. From E’s eyes and through her soul. It would be a lie to say it’s easy and that I do not still feel fear, grief, and sadness now and then, but more than that I feel love and I bask in her delight with herself and everything around her. Her delight in what’s possible.
It will be her soul that helps me surpass what my own mind thinks as possible. It would seem that this is a feat that can only be accomplished by Angels, and an Angel she is…my sweet Angel E.
No matter what you are going through happy or painful. No matter what your mind has determined is possible or not. No matter what you assume or think should happen, listen to your soul. It is a place within you where all things are possible for you and those you love. It may require looking at things a little differently. It may require abandoning expectations. It may require a whole new focus. It may require looking at something through someones elses’ soul so that your own feelings become more clear. It is here, in this place, the quiet place where you can find even the smallest sliver to make today ‘anewfavoriteday.’
I invite you all to reset with me today. To take a pain, fear, sadness and find the one thing that can turn it and make it just a little bit better. It all else fails, see today through this sweet Angel’s soul and you can find a space to make today ‘anewfavoriteday.’
Cover image shared from fibrohaven.com