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.
Happy Birthday, Sophie, and keep on keepin' on, Elizabeth!ReplyDelete
so beautiful. Happy Birthday to your Sophie!ReplyDelete
Incredibly beautiful post, Elizabeth. Happy birthday to Sophie...ReplyDelete
I have always wanted to ask that very question of you: How do you do it? But I suppose I knew in my heart how you do it. One moment at a time. One seizure at a time, one bite, one bath, one step at a time. There is no other way, is there? What I love about you so much is that you are all muscle and heart. You have the strength for those moments and you have the soul to be in each of them.ReplyDelete
I love you for that, Elizabeth. I am so glad you write about these steps, these moments so that I have been able to find you and love you from afar.
Happy birthday, Sophie- you will probably never know how many people you have touched with your spirit.
your words are powerful in wisdom and bright with motherlove. surely such insight, devotion and the willingness to share here and on your beautiful blog are manna to so many that are searching for comfort and courage. it is one thing to find yourself transformed, to navigate your way through initial fear to become the vital loving capable mother, woman, wife you are. it is still another leap of faith to share it all day to day as a way of helping others.ReplyDelete
i am honored to know you, sophie, and better for it.
loving you from afar.
March 8, 1995 - I will always marvel that Sophie and Katie were born on excatly the same date! And that we met.ReplyDelete
I also marvel at how our children's lives refine and complete our character. Not that they come into existence FOR us, but truly, the interweaving of our growth with theirs is quite a miracle.
Those dreams that we had the day our children were born...they are so natural. Adjusting to what life has given - instead of the fulfillment of those dreams - with some measure of grace, is also a miracle. And you are doing it. You are doing it with love, passion, creativity, humor, thoughtfulness, devotion and courage. Sophie and your boys are blessed that you are their mother. I am blessed to know you, and to be able to read your thoughts. Thank you for sharing them with us.
This made me cry. And yes, you ARE doing it, you WILL do it. It will be done.ReplyDelete
Gorgeous - truly.ReplyDelete
Happy Birthday, sweet girl. And congratulations, Mama. YOUR grace is stunning.
So glad you linked us over here.ReplyDelete
Love this. Love your writing and heart and way.
Happy Birthday to both, to all of you.
Such a beautiful post Elizabeth. I treasure your authenticity -- you capture the struggles and the beauty so well. Happy Happy (almost) Birthday dear Sophie!ReplyDelete
Happy Birthday, Sophie!ReplyDelete
We never know where we'll end up in life, do we? Beautiful post, Elizabeth.
Happy Birthday to Sophie! Elizabeth, this is such a moving post. You write so eloquently and convey so much.ReplyDelete
Such an incredible piece--so loving, yet so grounded in the day to day grinding reality of life. Should be mandatory reading for all health care and special education professions. Happy Birthday to Sophie and may her birthday be a day of peace and love.ReplyDelete
Beautiful. Happy Birthday Sophie!ReplyDelete
you are amazing, my dear. both you and your girl. happy birthday to both of you. i wish i lived closer.ReplyDelete
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