When Zoe was almost three, she spoke in sign. Words she could never say, were finally free with the fluttering, practiced movement of her hands. Maybe she wasn't speaking then because of her undiagnosed epilepsy, or her unrecognized severe vision loss. Or maybe it was because she was sick ALL the time, with one infection and hospital visit after another. So I found Christine, a local ASL instructor who came to our house and opened our world. I wrote about what that must have been like for Zoe and what is was like for me, here.
Zoe will be 8 soon, and her speech although affected has evolved so that most people can understand her, most of the time. Somewhere along the way, with six years of speech therapy, she stopped signing I love you, and began whispering it in my ear. Today she uses her words all the time. Yesterday she told me she wants a bike, though I have yet to find one she could ride. She tells me too, that she would like to dance ballet, go ice skating, surf like Barbie in the Mermaid Tale movie and that she will be a Mommy someday.
Last week, Olivia and I were driving in the car and we started talking about Zoe. We talked about Zoe's medicines and how her body doesn't work the way it is supposed to. And this is where I tread very carefully ,O's body doesn't work the right way either, and for the same underlying reason. Yet, these sisters are very different. O can run and climb, and bike and dance and someday I hope she will even surf. O looks and sounds just like any other typical 9 year old girl. O just gets tired faster than other kids her age and shares some of the less complicated health issues that affect Zoe. So we talked about Zoe's muscles not working well and how her inability to balance prevents her from walking, when Olivia asked " But Mom, Zoe will walk one day right? All by herself? All the time, like me when she get's older?" and I realized then that Olivia thought this was something Zoe would grow into. Gently, I replied " Well, the doctor's don't think she will, but she is stronger now than she used to be. We have to wait and see , but.. she may not."
Zoe's diagnosis dictates she probably won't...ever. Zoe's prognosis dictates a lot of things. But, Zoe.. well, Zoe is amazing and I don't like to use words like never and can't and especially not the word won't.
So I looked into Olivia's face then, to see if she understands what I have just said. And I see that her eyes, like mine, are filled with tears. She opens her mouth to speak and then pauses, - and I anticipate the emotional response of a 9 year old sister- saying it isn't fair , then I wonder if she will just accept what I have said and move on. But with the new maturity of a protective big sister - she asks " Have you told Zoe, Mom? Does she know?" and with that spoken I see her loving care and affection. I see the same grief I sometimes feel. She is worried for her sister, afraid she will be hurt and disappointed.
I think about some of the words that have hurt lately. Zoe, pleading with me to walk at school with her pretty new shoes. Zoe crying because she really wants to read and isn't quite there yet. I think about the words Olivia just spoke- and the emotion and raw ache that came tumbling out with them. I think back to when it was only the words left unspoken that hurt .The day I called my husband, from the Cleveland Clinic to tell him we had finally found what was wrong with Zoe, and then I cried, while he waited on the other end of the phone for the words that were still to come. I remember how we would ask our neurologist with each visit to Cleveland, will Zoe walk? Will she talk? And there was more that was left unsaid with each answer to our questions. I remember Olivia's diagnosis that came later and again how much the doctors didn't say, because little is known about the progressive path of this disease. And I remember when the Doctor's phone call came to tell me about a recent stroke they saw on Zoe's MRI and what I did not say in the silence. The memories of Zoe as a toddler, awake and crying through the night as if she were in pain- yet she was unable to say anything. I would cry silently, tears streaming down my own face as I nuzzled Zoe close -kissing away the wet on her cheeks, using my breath to cool the sweat on her brow.
Today it is bittersweet, there are words that wound and bring sorrow, and words that fill us with happiness and hope- yet none of these words can compare , to the heartache of the words that are left unspoken.