A Break

I have been needing a break for awhile. The last six months two and a half years have been really rough. Since Ezzy was born 29 months ago I have spent three nights away from her. I was away for two to travel for a conference I hoped would help land me a job (that I wouldn’t have been able to accept afterall!) when Ez was about 10 months old. Until this weekend that was it.

As a family we have gone away for one vacation to Maine back in August 2011, post-aspiration, pre-seizures. It was lovely…and tiring and slightly frightening since we were a bit far from a hospital.

Going away together now seems like a pretty long shot since my hubby uses most of his vacation time to help when Ezzy is in the hospital…and she has been in the hospital about 30 days total, I’d say, in the last year. The idea of getting in a plane without a medical team sounds like a nightmare I have had several times. And being anywhere that isn’t under three hours from our Children’s Hospital just sounds crazy given the fact that Esmé’s health issues are still so confusing even to her team.

Don’t get me wrong, I am complaining perhaps a little bit, but not too terribly much. We manage to make bizzarro Ezzy vacations out of hospital stays. We try to have fun as a family no matter where we are–or how stressful things get. It is very fortunate that we all genuinely enjoy each other so very much. And I make do with little breaks here and there–a massage, a moment to take a shower alone…and, frankly, it is pretty good.

But the last few months of contant illness, coming on the heels of thinking that we were finally about to get her all sorted out with the right meds and a surgery to repair her nissen fundo, I have just been feeling burned out. I know on some level it is part of learning that this race we are on is not a sprint but a marathon and that I need to pace myself. It is also part of coming to terms with our lives as they are. It is also just straight up fatigue and exhaustion that, even though we have night coverage many nights, creeps in from the persistant stress that we live with–that invades my sleep in the form of stressful nightmares about how to deal with a medically fragile child in the event of the zombie apocalypse, and invades my days in the form of obsessive emails to doctors, tracking of symptoms, and generalized anxiety that I am missing some puzzle piece.

This weekend one of my most favorite people in the world came for a visit to NYC–which is a convenient train-ride away from me. My friend usually spends her time on the West Coast (which is WAY TOO FAR away) and we must make do with facebook and email and phone calls. I miss her as though a piece of me was missing. And I was so excited that she would be close enough for me to spend an entire overnight with her in the city.

I road the train down–working on The Cute Syndrome Foundation paperwork–and met her in The Bowery. We spent the entire time walking (about 12 miles total), talking, and eating–fresh strawberries in Union Square, Gazpacho at the City Baking Company, lemon bars and cupcakes at Magnolia, dinner at Supper, gelato at Grom…It was perfection.

The walking helped me feel in motion even as I was taking a break…it made me feel useful, engaged, and excited by the sights…but we walked without a strong purpose…wandering and pausing as we wished without a thought about what time it was in a way I am so unfamiliar with these days.

And the talking…you know, at least for me, there are some things I don’t think I understand about myself until I say them out loud to someone I love and trust completely. I found myself realizing I was holding on to things–fears mostly–that I didn’t understand, but that felt a bit less frightening once I voiced them…especially when I did so between sips of cool white wine and bits of pappardelle with wild mushrooms. It’s that thing that happens when you are able to get a little bit of perspective on your life, all while holding on to someone who you know anchors you to the person you are fundamentally.

I know so many people who come back from a weeks vacation saying that it wasn’t long enough. Well, my little vacation was just the right size. And although Ezzy was pretty sick while I was gone–my darling hubby almost brought her to the hospital–she had a pretty good time considering. And my hubby did a lovely job of caring for her (no surprise there). Ezzy seemed so happy to see me, as I was to see her.

When I rocked her to sleep, I was so happy to hold her…and the amazingly frustrating night the night before I left when she would not sleep AT ALL seemed like a distant memory. And we were able to start again, fresh.