The deal with me is that I hate to say that I’m defined by my daughter, but the fact is that I am. After almost fifteen years of dealing with her profound disabilities, watching tens of thousands of seizures and running ferociously toward any implied help, I am changed. Changed, though, from whom? I know that were I to extricate myself from Sophie, the neurologists, the alternative practitioners, the drugs, the treatments, I might have to build someone new. I have a feeling that relationships, those with husbands, with children, with friends, might only be abstract and that I am and have been busy using those relationships, those people, to make myself up.
Sophie has been alive for fifteen years this March 8th, and during all of those years, save her first three months, she has endured multiple seizures every day. We have yet to find out why, and her imperviousness to traditional anti-epileptic medicines has stumped all of the doctors we have consulted. The western medical world, in particular, looks to define everything in the most concrete terms. There is a way to describe Sophie’s particular type epilepsy, a definition that in essence reveals absolutely nothing. Sophie’s diagnosis is “refractory seizures of unknown origin.” It seems that Sophie’s brain is incredibly dysfunctional for no apparent reason and will not respond appropriately to any kind of customary intervention.
When I gave birth to my beautiful daughter on March 8th, 1995, I naturally had no idea what the future would bring. A new mother, my expectations were like those of millions before me. I would love this child and with my husband bring her up happy, well-adjusted, educated and, hopefully, tolerant and kind to others. I thought my values were simple, my hopes pure, and my faith in the natural order of things profound. Three months later, when Sophie was diagnosed with infantile spasms, these expectations were quite abruptly up-ended. The particulars of that time are crystal-clear to this day, but only much later was I able to articulate the stunning loss I felt. It seemed that day that the child I had given birth to had been taken from me and replaced with someone new. It seemed that I would have to redefine my expectations, redefine Sophie, redefine myself. And unlike those expectations that I had had before, those of a normal life with a normal baby and family, these were terrifying. In fact, I really had no more expectations; there was nothing, it seemed, to expect.
I often tell people who ask how do you do it? that if someone were to tell me fifteen years ago that I would still be comforting my now five-foot tall adolescent daughter as she seized on her bed, or that I would still be feeding her because she can't feed herself, or that she must be bathed and dressed and kept clean because she can't herself, that she can walk but with assistance and has never uttered a word -- well, I might have felt like jumping out of the fourth story window of the tiny apartment where I lived, that baby in my arms.
Fifteen years ago this place, this time, this person that I am and this young lady for whom I have been given the honor of caring were enveloped in fog, buried in deep moss, sheltered by thick trees, invisible to any presentiment or even reflection. Despite the near-constant struggle, I look at my Sophie and am filled with love for her. I marvel at her grace while wishing for her ease and gather my other two children, my strong boys, my husband into my gaze. I feel the presence of my family, my mother, my father, my sisters and brothers-in-law around me and then my friends, those who share much of my life quite literally and those who are far away but with me in spirit or likeness.
And it is good.
That is what I tell the person who asks how do you do it? That is what I tell myself when the enveloping fog, the deep moss and the thick trees loom ahead, when the path is obscured and I think how will I do it? I know that I will find myself, fifteen years hence, doing it, and it, too will be good.
Elizabeth blogs regularly at a moon worn as if it had been a shell.