Photo Credit: Beach Shoes by Doug8888 on Flickr
I stopped sleeping on my own about seven years ago. This confession makes me squirm. I feel a shame in it, like I’m some kind of addict coming out to the world. I became an insomniac during a particularly difficult step in Jordan’s Journey; during some of the worst regimens of chemotherapy and frequent hospitalizations. It was so long ago, it’s hard for me to remember how small she was back then. She was only seven. She still had the same fierce will of the warrior we know and love.
I’ve always been a light sleeper. I can only remember one period of time, when I was about Luc’s age, that I could sleep for hours and hours without interruption. Other than that time, the slightest sound wakes me. Ordinarily, my fragile sleep state wasn’t a problem because I could always fall back asleep. But during that horrible year in 2006, I couldn’t go back to sleep. Sometimes I couldn’t fall asleep at all. After lying in bed wide awake for a long enough period of time, I’d wander the house and get things done. People thought I was crazy when they got emails from me at 3am. Little did they know it was not by choice.
I suppose it was understandable when my doctor insisted that I let him prescribe a sleep aid. Jordan had recently experienced a seizure so severe that she was nearly ventilated. That was the first time anyone ever asked Jeanette or I if we wanted to sign a DNR (do not resuscitate) order. Of course, we declined. But the question lingered. I can’t say that the question kept me awake at night. But something did. From that day forward, when I wanted to sleep, I took the pill prescribed to me. This went on for years until this summer when I decided enough was enough. I hate pills. I hate being dependent on anything or anyone to live a normal life. So, I stopped taking my prescription in June and, after several sleepless nights, discovered what I was missing for seven years: dreams.
We all dream. Every night. We might not recall what we dream, but our minds do it effortlessly and habitually. I can’t really claim that I haven’t dreamed for 7 years, but when taking sleep medication I seldom awoke with any recollection of my dreams. That has changed. It’s wonderful. While I’ve certainly experienced some nail-biting thrillers, I have also enjoyed saturated adventures and nostalgic epics with my family. I’ve refamiliarized myself with that wonderful feeling when you wake up and your emotions are still in the dream state—bubbling, moved, enlightened. These are the feelings that stick with you through your breakfast, follow you into the shower, and linger around during the morning commute. I suppose most of us take them for granted. After 7 years of absence, I find them delightful.
This morning, I awoke from one of those dreams. It was a Labor Day dream. It was a dream of an experience that never happened, and yet it felt so authentic. It felt so natural. It felt so much a part of my conscience I had to ask if it wasn’t somehow part of my family history.
The dream was a postcard to the end of summer. Jeanette and Jordan and Luc and I were at the beach. To see the way we were dressed in my dream you would have imagined that Ralph Lauren was a close family friend. We wore rolled up denim and white cotton shirts. We walked barefoot on a shore that wasn’t quite on Santa Monica bay, but it did feel very much like a place we’d been many times. The kids quarreled a little as they disrobed into their swimsuits. We taunted one another with jokes. We laid down blankets on the sand. In my dream, I felt the heat of the sun on my skin. I felt the absence of care. It was the slowest moving dream I can remember, and yet the emotions connected to it were overpowering. My girl, The Slayer, was perfectly normal. I know that word ‘normal’ is a misnomer that we are often cautioned to avoid, but let me explain what I mean. In my dream, Jordan’s feet were perfect. She ran and jumped and flicked sand with her toes. Her speech was also perfect. She argued about books that she read. Books! She read one right there on the sand. At one point in my dream, I remember Jordan having friends that joined us for awhile. Friends. Girls who gossiped with her and giggled about the travails of middle school life.
She was a perfectly ordinary teenage girl, no less beautiful than she is today, and not the least bit impaired in any way.
It’s a silly dream, I suppose. Perhaps it was my over-sentimental imagination. Perhaps, it was in response to the night before, when I sat with Jordan and Jeanette on the floor of her hospital room piecing a puzzle together. Jordan’s head was wrapped in gauze so that she wouldn’t accidentally dislodge the electrodes that are glued to her scalp. Here and there she complained about how itchy it was, but Jeanette and I were usually able to distract her. She was sanguine but quiet. Earlier in the day she experienced her first real seizure since being admitted. It lasted for several minutes and left her tired and bereft of much to say. For the tests to be truly useful, we need a few more of these seizures to come on while she’s wired. It’s the one time we oddly find ourselves hoping for a “good one.”
It’s scary, too. To facilitate the process, the medical team has weaned Jordan off of all her medication. She’s living without a net. Granted, she’s in the safest possible environment, with round-the-clock medical attention and her every move observed by computers and cameras. Still, I can’t help but think back to when the seizures took her away from us for a week … when she didn’t seem to know I was there … when they asked me if I wanted them to resuscitate her should she stop breathing.
I’ve been awake for three hours and I still can’t shake my beautiful dream. I can still see Jordan on that beach, drenched in orange sunlight, attracting boys’ attention, irritating her brother, exasperating her mother, and running off into the water when she felt the need to escape her parents. It’s a life we might have had. Sometimes, that feeling makes me angry. Sometimes, it makes me hopeful. I wouldn’t trade a day with The Slayer for anything. Despite the traumas and the setbacks, she is a family blessing, just like her brother. Our journey has been unique, and I remind myself how wonderful it has been to travel it with these beautiful souls I call my family. How much we have learned to lean on one another. How much The Slayer has taught me about life. How much I can feel the warmth of the sun when she smiles at me and asks to start another puzzle.
Still, I sometimes dream of the end of summer, and the perfectly ordinary life that could have been.