"I don't have any hopes or expectations. I just want my son to be in a program where he will get whatever care he needs. I don't expect anything from him -- I don't expect him to be normal."
I am at the first weekly meeting of a dozen or so parents, organized by Ayelet's new day care program, listening to Tracy describe her son's history and her own expectations for the coming year.
Ayelet is my adorable one-and-a-half year old daughter. Born at just one pound two ounces, she defied all odds and all doctors' prognoses, growing and developing beyond anyone's wildest dreams. Yet she does have certain difficulties. She is a slow developer, and she has a vision impairment due to her prematurity. Since she came home from the hospital at the age of four months, she has been in the constant care of all kinds of therapists -- physical, occupational, speech, feeding, and vision. We've now decided to send her to a special morning program where she will receive all the paramedical care she needs, leaving her and me free for "regular" activities in the afternoons.
Tracy is the last parent to speak. We have all just introduced ourselves and our children. One mother discussed her hope that the program will help bring out her daughter's hidden potential that she knows exists. One couple was quite overwhelmed, still trying to find their bearings after having only recently returned to Israel from the States where they traveled for their child's surgery. Other parents focused on their fears of leaving their precious children in strange hands. But until now, all seemed very optimistic, convinced that this program would provide what their children need, and wanting to do whatever possible, and even more, to help their children.
"Our son will never be what we had always hoped for in our children."
Tracy speaks very pragmatically. "This is our son," she explains, "this is what he is. He will never be what we had always hoped for in our children. With no expectations, we won't be disappointed if his situation deteriorates." Her speech shocks me like a bucket of ice water in my face, waking me from my comfortable complacency. I have always been optimistic, always hopeful, and I just can't relate to Tracy's view on life.
"I am always optimistic," I counter. "I understand that every situation is different and that you might have less reason for optimism right now than I have, but we've had hard times too. I believe in living in the present, with hope for the future. If things get worse, deal with it then." I've learned that God gives most people the ability to cope, even in situations that to others seem unbearable.
"But think back," says Keren, the group leader. "Didn't you ever feel like Tracy does now? Wasn't there a time when you were more pessimistic and less hopeful?"
Did I ever lose hope? I ask myself. Did I ever feel that it was better not to have any hopes or aspirations, just so I wouldn't be disappointed? Did I ever look at my daughter's medical or paramedical care with indifference, thinking that it wouldn't help in any case?
I think of Ayelet inspiring hope in us every day. I think of her talking to us without words, smiling, laughing, and throwing a tantrum. I think of her marching around the house holding on to anything in sight, persistently pointing at some object she wants and expecting me to understand her. Doing normal things any one-and-a-half-year-old would do.
And I think of Ayelet shortly after she was born, when doctors told us not to hope and nurses offered comfort by telling us that we were still young, that we would have other children.
Please just let her live, I scream silently.
My thoughts go back to when Ayelet is two days old. I sit beside her incubator, one hand resting gently on her back so that she feels my presence. I talk to her, but my thoughts are directed toward God. Please just let her live, I scream silently. No matter what, just let her live. I am not thinking of health at this point, not of sight or hearing or intelligence. The only thing that matters is life.
A day or two go by. I spend hours with Ayelet, and I spend hours watching the graphs and numbers on the monitors to make sure that she is still stable (something the doctors have told us could change from one minute to the next). I am tense and nervous any time I am not at Ayelet's side; when I return, I quickly check to see that she is still where I left her last.
And then, suddenly, realization dawns. I am sitting by Ayelet's incubator, watching her tiny body move up and down as the respirator breathes air into her. My husband is sitting nearby, and I turn to him in wonder and say, "It doesn't matter what will be -- that's not the point. We have Ayelet right now, let's appreciate and enjoy her now, regardless of what will happen later." And I relax as I watch the rhythmic breathing, as I see her nice red color, her hand move involuntarily. I relax and enjoy the time I am able to spend with my daughter, though it may be under different circumstances than an average new mother. I do not know what will be (and who does), but I can do the best I can and be the best mother I know how given the present circumstances.
This realization calms me. I am not nearly as nervous as before; my focus is now on living in the present and extracting any enjoyment possible, not on the future.
Much later (or so it seems), I begin to read about various problems that tend to face preemies. Much later I begin to deal with the future, to ask questions, to seek advice, to search for solutions. Much later, I expect Ayelet to be my perfect baby and agonize over any slight sign of imperfection. But for now, time stands still.
Did I ever give up hope? I ask myself, returning to the present moment. Did I ever look upon my daughter's situation with apathy? I think of the first time I took Ayelet out of the incubator, of the feeling of her warm body against mine, of my husband excitedly snapping pictures of the momentous occasion. No, I think to myself, I never did.