We had an unusual week last week. We spent the better part of it with photographer Brent Stirton who was with us doing a shoot for the Novartis annual report. I am not certain what exactly I expected out of this experience…but since we are rather used to having therapists, nurses, and case-managers in and out of our home all the time, observing our interactions with Esmé, I think I figured this would be sort of similar.

It wasn’t similar at all.

Instead it was one of the most unexpected and strangely defining experiences in our time with Esmé.

We have chosen to live aspects our lives very publicly for those who care to follow. At first it was a decision that was mostly about my sanity. When I started this blog it seemed I spent most of my time in bed with Esmé waiting for the next seizure. I needed an outlet, plain and simple…a way to reach out through my isolation and give some semblance of greater meaning to my day to day life. And I never expected anyone to listen (although my time at my high school bicentennial this past weekend made it so clear to me that more people are listening than I thought…). Once Esmé was diagnosed with PCDH19 Female Limited Epilepsy, this space became all about awareness. And in some respects I have missed the freedom that went with this space being an outlet rather than a pulpit.

But this week, through the process of being observed through a camera by such a thoughtful and curious person, I was was taught (and reminded of) a few things, leaving me feeling re-energized and re-focused on our lives, and why we choose to live this way. I do find it hard to explain exactly why all of this was so deeply touching to me, but I am going to try to explain it, because I feel as though it is significant for what this space is all about.

I understood that I was going to learn something from this experience about two hours into our first day when Brent was observing a typical Esmé moment in the backseat of the car. Ez was resisting being entertained. My mom said something about Esmé “being annoyed with Mema” and Brent said between the sounds of his camera snapping “Oh, she is just so elegantly bored.” I was driving at the time and couldn’t “see” Esmé’s face, but it was such a keen observation that painted a perfect picture of an expression I know so well.

…and I though: oh boy, he gets her already, this is going to be fun!

I’m not sure if it is always like this, but Brent is not simply a quiet or passive observer the way I imagined he might be, watching through his lens. He asks questions, engages in whatever is happening so that you are acutely aware of his presence, but in a way that, rather than being distracting, seems to have the effect of making you more comfortable…more simply you…more mindful of your life. The result is that you relax and quickly recognize that these aren’t going to be the kind of glossy pictures that make everything look ok… You aren’t going to hide, so you might as well just be yourself…and be real.

And so you see something of yourself mirrored back at you. I suppose it is always interesting to come in contact with how other people see you–especially in regards to these closest of relationships, the relationship with your child. This relationship, to me, is so all-encompassing that it resists my language. My relationship with Esmé is something I can only ever talk around, approximating what it means in the way one might struggle to paint a picture of a scent or write the music about a view…and so I rarely encounter it head on in the way that I did on the second morning when Brent simply asked: “Is there any end to your optimism? And what, exactly, is it that you are optimistic for?”

I must admit that I was startled by the first question. I have rarely seen myself as “optimistic.” I’m not naturally an optimistic person, and I suppose I have always just seen myself as following Esmé’s lead…but I couldn’t stop thinking about what he asked. For days I have thought about what I think the right answer is. And I still don’t fully know. But it is a question that gets right at the point of who we are as a family.

The best I can do is to say that this is where my faith kicks in. I don’t believe in the whole “God only gives special children to special people”…or that “everything happens for a reason”…the way that people are SO fond of telling me in that vaguely pitying way that distances themselves as much as possible from whatever “reason” this happened to me and to my daughter…in that way that suggests that there is nothing to be done.

I mean it more in the way that acknowledges that life happens. It is difficult and surprising and frightening and unfair…But you keep on moving and you do your best and in each of these things there is beauty somewhere…in the human will, in basic kindnesses, in unexpected places, in creative solutions. I see beauty in so many places in our life. It isn’t what I expected, but it is beautiful…and we work to make it more wonderful every day, by embracing people, activities, and things that are good for us and letting go of people, activities, and things that aren’t.

My faith, my optimism, my hope–it is all in the doing. Not the doing when things are easy…but the doing when things are hard. And as I was discussing with my friend Jon today, it is in the opposite of what Coco Chanel advised (to mis-paraphrase her) about not spending time beating against walls hoping to make a window… I think you have to make your own damn windows.

That’s how the light gets it.

And for this reason, the thing I am optimistic for isn’t a “thing” at all. It is an action. I think am not optimistic for an end goal for Esmé…an end goal seems so simplistic and limiting. I cannot begin to imagine the things that may be possible in her life. Instead I am optimistic that I will continue to act and be in the world in a way that that keeps her as safe as possible, that does justice to her spirit, that nurtures her as she is while pushing her to grow, and that spreads her exquisite happiness (and occasional elegant boredom) as widely as possible.

One Comment

  • It has taken me many, many, many years to learn that life is not at all about an end product, but the living moment to moment, the tough times, the happy times, the sad times, the tragic times and the times when we make remarkable connections with those we love and beyond. It is a honor to read your posts.

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