I finally conquered the inertia and made myself do a couple of errands today. One was collect my nighttime insulin from CVS – something I really couldn’t put off for another day. While I was out, I made myself go to Target. There are 5 or 6 pregnant women at work (I’ve lost track), and I had to buy some baby shower gifts. We were also almost out of toilet paper, if you want the really mundane details.
While I was there, I found myself frequently thinking “when my life gets back to normal…” or “when this is over…” And then I realized, there is no going back. There is no “over.” Ever. Normal is just a word, and it is a word that does not apply to me or my life anymore. No matter what happens, my framing of the world, my lens, has shifted. James will either live and be a medically fragile child, living on borrowed time with an incurable, “life-limiting” (nice term for terminal) disease, or he will die, leaving me a bereft mother with a giant hole in my heart that nothing will ever fill. Either way, there is no way back home, no way back to the safety of my previous life.
In a minute, everything shifts. You go from having a “normal” life – 2 beautiful children, a house with a mortgage, a job you love, a spouse, and the world feels rock-steady under your feet, to being plunged into a world of medical terminology, Facebook groups, dying children, and multiple weekly doctor visits. It is a shift that happens so quickly, there is no possible way to be prepared.You were once the supportive friend that tries to help others who are struggling and now you are the mother that everyone pities but secretly thanks God that they are not. I mean, let’s be honest, if you aren’t in this situation, I bet you’re incredibly thankful that it’s not happening to you – however sad you are that it IS happening to me. Having experienced this now from both sides, I know this to be true.
With a shifting of perception such as this, there comes a tendency to think that you are suffering more than others around you. Today, I had a non-stress test. NSTs are conducted in a room at the doctor’s office with 2 loungers. I was in one, another woman was in the other. She was tiny other than a huge baby bump and looked rested and relaxed. I heard her tell the nurse that she’d just gotten back from vacation. She was snoozing during her NST. I thought (contemptuously, I’ll admit it) that she was probably having an NST for some mild condition – mild pre-eclampsia or gestational diabetes or some other piddly reason that would likely have no real long-term affect on her baby’s outcome. She couldn’t possibly know what I was worried about, the fear that I carried within me, the daily turmoil of my emotions.
My specialist came in around this time and chatted with me for a moment, then began chatting with her. As I listened, it became apparent that the woman next to me was also carrying a medically fragile child – a baby with a heart defect that would require heart surgery. She was also growth restricted. I felt ashamed of my assumptions. How could I know why she was having an NST? And why did I presume that just because she looked a certain way that she wasn’t grieving or stressed? Just because my son suffers a severe disease and many unknowns in the days ahead doesn’t give me the corner on suffering.
I see the meme on FB all the time “be kind…you never know what battle someone is fighting.” It’s trite, but it is also true. Be kind to people, even when they aren’t kind to you. You really have no idea what they’re dealing with or suffering through at any moment. Listening to my doctor speak with this woman, I felt an aching empathy.
I am not alone. This is not a new path. Many others have walked it before me, and many others will walk it long after I am gone. Suffering is not unique and it is not limited. The attacks in Nice are a testament to that.
Give someone a hug today or perform a random act of kindness. You have no idea what it might mean to someone. One of the technicians at work picked me a beautiful bouquet of flowers today. A simple gesture but one that made my day that much brighter. Pay it forward.