I am not sure when it gets easier. There is no road map, no instruction manual. You just do your best to get through the day by day, living life to the fullest. We go months, just living a typical family life and then something else comes along.
Things changed for me with Zoe’s original diagnosis, and again with Olivia’s. I look at life differently and am unable to explain how grateful I am, for the even the smallest graces .
Then one day ,, I took Zoe to the eye doctor- and the diagnosis was that Zoe would lose her vision. Looking out the car window on the way home, I saw everything anew, beginning with the simple blue of the sky. I tried to imagine not seeing any of it ,and felt fear. I went to a school orientation that night for Olivia, and sitting in the brightly colored, decorated classroom, I wondered if Zoe would see these things on her classroom wall, when she reached first grade.
It has been a year since that time. We have done everything we could to prepare for the possibility.
But along the way, we also saw two other doctors. Two other expert doctors , that disagreed with the first diagnosis. Two other doctors that did not feel Zoe would lose her vision. And with the score 2-1, I began believing that it would not happen. We have been learning Braille, and giving Zoe the tools she could someday need, but in my mother’s heart, I just did not want to believe it could happen.
And then last week, we saw another eye doctor, to study Zoe’s vision function . Although she did not want to be involved in the medical debate, she felt compelled to tell me that she saw optic nerve atrophy when she looked in Zoe’s eyes. She also saw damage to the retina. . Two irreversible things that lead to vision loss. So there it was .Game on again, score 2-2.
Since that day, I have been moving through our daily life. Appointments at school, working – homework projects, quiet late night dinners with my husband, board games on the floor with the kids, snack at the kitchen table each day after school.
And when my eyes rest on Zoe’s face- so grown up with her newest pair of glasses, I feel the shock of the scream that reverberates within me. It is right there under the surface. So present, that I am surprised that others cannot see it, feel it, even hear it sometimes. It is a deep painful cry of grief, the possibility of things to come. The unbelievable chance that in addition to not being able to walk, someday Zoe might not even be able to see; the books that she loves, her favorite doll, the pictures that we draw for her and the pictures that she has just begun to draw for us.
I have been through this grief before. I know that it will fade, and when it does I will feel whole again. And because I know that you can’t mother this way, or live fully this way- I bury it within me.
It takes all my effort to focus on the positive in each day; The bright sun that rises in our desert each day, the warm spring breeze that has begun to blow , the little girl smiles that greet me each day, the hugs that envelop me each night, all of these things that in time will cause this grief to fade.