I am back to work. My schedule is not finalized, so I have been picking up shifts here and there. I love being back at work. My job is a source of great satisfaction to me. I love medicine, I love emergencies, I love my patients, I love the doctors and staff that work with me, and (the vast majority of the time), I love my patient’s owners. My job is incredibly satisfying on many levels (although often depressing, deeply emotional, and hard), and it gives me joy to do what I do. I’ve felt a sort of renaissance with regards to my spirits at work. More than ever, I want to offer clients comfort and reassurance when they are worried about their furry family members. More than ever, I want them to have an excellent experience when they come to us for care. More than ever, I want to fix my patients. And if I can’t fix them, then I want to give them comfort and comfort those who love them.
That said, it has been hard leaving James at home for long shifts. I have worked 3 in the last week – the first two were 10 hours, and today was 11 hours. Luckily, they were very busy (I’ve done 4 major surgeries in 2 shifts), and I was constantly occupied.
Unfortunately, we have a Masimo pulse oximeter at work. It has the exact same alarm as James’ pulse oximeter at home. Every time the alarm goes off, I have a physical reaction to it. My skin crawls, and my heart rate speeds up. At one point, my chest was so tight that I could barely breathe for a minute or two. Tears came to my eyes. I had to force myself to control the anxiety, to not allow it to control me. I was successful for the most part and was able to carry on with the day, but the anxiety was there, just below the skin. I swear that I hear that pulse ox in my dreams.
Work has created a strange feeling within me. It’s so normal. It’s normal to be there, examining patients, writing orders, doing surgery, talking to owners. It feels like before – before we heard the diagnosis, before we met James, before my pregnancy went from joyful expectancy to constant fear and sorrow. Work is the epitome of the every day for me. And yet, NOTHING is normal. I have a son with a terrible chromosomal disease. A son that requires feedings through an NG tube and oxygen support. A son that will need – at the bare minimum – open heart surgery sometime in the next 6 months. If we are lucky enough to get there. A son that is disabled. A son that may not see his 1st birthday.
There is a jarring crunch when these realities collide. When I come home from a normal work day to my sick son, I feel momentarily disoriented, as if I’m a little kid just getting off of the merry-go-round -the world temporarily unstable beneath my feet. Work gives me a false sense of normalcy -a false sense that I’m just another mother with a disabled son. When I’m at work, I feel like just another person in the world – almost an out-of-body experience. Work reminds me that I’m not special, that there are others in the world too that are struggling with a variety of experiences. It makes me feel like everything is going to be ok.
But everything isn’t going to be ok. James has a chromosomal disease that will never go away. He WILL die young. My brain is constantly trying to reconcile these confusing feelings.
So I come home, and I see my beautiful little baby boy, the one that I missed terribly all day. I want to snuggle him and nurse him. And for a second, my heart breaks for what is lost, for what is coming, for what he must face. For what we must face. Then I readjust to the new normal – the medications, the NG tube, the constant hum of the oxygen concentrator, the pumping without the joy of breastfeeding, the pendulum that swings above us constantly – and I go on with my life.
I can’t fix him. I can only face each day with the knowledge that James is loved, cherished, protected, and has enviable care – from his medical team and from his family. We’re doing all we can, and even if we can’t fix him, it will have to be enough. We will provide him with love and comfort and whatever we can to help him reach his potential. And that will have to be enough. It. will. have. to. be. enough.