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The alarm clock thumps to the sound of Daft Punk in a neighboring room and I continue on with my nap until noon. This was the normal sleep schedule I was on before Zoey was born. Working second shift, it was common to go to bed at 2 or 3 in the morning after clocking out at midnight. I would have a few hours to sit at my typewriter, tapping the keys, and doing things around the house before going to work.
These days I’m lucky to have four hours of sleep before starting my day. My former cushy routine has been replaced by a list of things to do before work and after seeing Zoey. Laundry is a task that is done while trying to clean the rest of the house and is often forgotten until a day or two later. If Zoey was having a rough day I might stop into the NICU at 3 or 4 in the morning and spend some time with her just to feel better about the few hours or rest I might have.
There is a level of guilt that comes with having a micro-preemie. It’s different from wondering what was done for Zoey to end up in the NICU or if there is some karma floating around that placed her there. It’s the guilt of being alive and healthy while your child is struggling to start her own life. I don’t know if it’s survivors guilt or some version of PTSD that other NICU parents I met have been diagnosed with.
The days are long and easily blur together with me forgetting what happened the day before and forgetting which day of the week it is. The night terrors I had as a child, waking up in the middle of the night without the ability to move, have returned. Usually, these events are proceeded by a nightmare where something happens to Zoey and I am unable to do anything about it. The control I had in my previous comfortable life I have brief glimpses of from time to time. Sitting down to pay the bills has become an empowering chore, obtaining some control over the task.
I never know what the day will bring with Zoey. Sometimes she will try to show off and have a spell after I arrive to see her with her heart rate and oxygen dropping for a few seconds and sending the nurse rushing to the room. Is this her way of trying to remain the center of attention, a tiny drama queen that knows how to get the response she craves? The tough days involve going to work when her numbers are consistently below their desired levels. The evening hours are when the lack of sleep takes hold and I have to push through for an hour or two until my routine takes over and my body works on its own. Thankfully, I have a series of mindless chores that help move the time and keep me moving until I leave at night.
The early weeks of Zoey’s stay trained me not to sleep in. There was the question at that time about her mysterious infection and the day she coded as I stood in the room watching the crew put her back together. The care times became a top priority back then and to miss one left a feeling of guilt that stayed with me for days, always wondering what if that was the last care time I was going to be with her?
Zoey is growing now. Reaching three pounds, she has almost tripled her weight in a matter of 53 days. Not bad for someone who was just over a pound, two days after she was born. While one might think this is a good time to catch up on sleep I now have to prepare for her homecoming. Sarah and I have two houses to prepare and maintain. After a mini monsoon in early July, our yards became an issue taking more time away from being at the hospital. I know this won’t become easier. Even when Zoey is home I will have to balance caring for her and the house when I’m not sleeping.
I am told that sleep will be in short supply for the rest of my life, especially when Zoey starts dating. I don’t know what the world will bring for her. I have a habit of looking to the distant future and that worries me. While the nurses and doctors have to helm of the charter vessel Zoey I have been plotting a course for the distant lands she will be traveling towards. At my bank, I started a savings account for college. I found a comprehensive program for elementary Spanish. The books I wish I had read as a child line the shelf in her room hoping she takes better advantage of her time than I did with mine. I don’t plan for retirement anymore. I was told in high school that Social Security will be gone long before I reach retirement age, instead, I work towards making sure Zoey will be secure in living a fulfilling life. While I try to distract myself with these questions and think ahead to the future the majority of my sleepless nights is caused by tough days and setbacks Zoey sees on a daily basis.
Zoey is doing well, gaining weight, and making gains as she moves ahead to a future discharge time, but my biggest fear is some unexpected blow that might keep her from reaching it. Sleepless nights may become the new normal I will have to deal with and later when she asks me why my beard is so white she may one day understand when I only answer with a caring smile.
Photo: Pixbay