It’s been so long since I’ve written here that WordPress has changed the dashboard a little, and I didn’t even realize until I just logged on. This is a long one, so buckle up in your quarantine nest or wherever these words find you. Nearly three months, the longest break I’ve taken in the ten years I’ve had this space. But for most of us, it’s the last few days that speak the loudest. Life always happens that way, years of a record sailing around and around with a needle tracing a line smoothly, the rhythm predictable. Then scratch, that noise, that halt.
My halt came a couple of months ago, even before COVID-19 landed on America’s shores, but tonight, everything feels magnified.
Just after New Year’s, both of my kids got some nasty respiratory bug and within a few days (first Norah, then Jude) they were both diagnosed with pneumonia. With the right meds, Norah’s healed quickly, but Jude’s did not. It hung on and on and he was on two rounds of antibiotics and oral steroids plus two different inhalers. It was a much heavier handed medical approach than I usually have to take with him, but his breathing was so coarse for weeks. Then on January 29th, he got this odd complication where he started vomiting numerous times a day as his body was healing from the respiratory stuff. It wasn’t exactly typical stomach bug behavior; instead it was almost constant … gagging? retching? dry heaving? From the beginning, I knew it was something odd because in a decade of parenting, I’ve never seen anything like it.
Long story short, after countless pediatrician visits, an ER visit where they swabbed him and gave us a confirmed diagnosis of Rhino-Enterovirus, and two GI specialists, he was misdiagnosed twice and then finally diagnosed with something called post-viral gastroparesis. It’s essentially when the vagus nerve becomes damaged because of a viral infection, and since the vagus nerve wraps all the way around your digestive system, it affects stomach nerves as well. In literal terms, it translates to “stomach paralysis.” In reality, it has meant 6 solid weeks of vomiting. We are on day 50 right now.
Parents, you know what life feels like when a stomach virus hits your kid? Imagine that + 6 weeks of it + a full time job + single parenting + a little sister to also tend to + scary research that told me it could go on and on and on for a very long time, sometimes incurable. Then all the practicalities — homebound instruction for him while I was working, occasional IV fluids, isolation from his friends and activities, carrying vomit bags everywhere, running out of PTO and working a job I only just began in August. To say it has been the hardest few weeks of my life is no understatement. There is nothing worse than worrying for your kid’s health, and I guess I always knew that abstractly in my head, but now I know it in my heart and in my bones in a way I can never forget.
Because it is nerve-centered, there is no reliably effective medicine. We got something from the GI that helped for a few days but wore off. Then about three weeks ago, a student in class asked how he was doing and I explained the diagnosis, and another kid raised his hand to say that he had the same thing in 6th grade and this parents found a chiropractic / injury rehabilitation center nearby that essentially rehabilitated his vagus nerve. This coincidence is pretty crazy (Thank you, God) because it’s a rare thing. I made an appointment that day and I’m happy to say that our protocol there (a combination of chiropractics, craniosacral massage, microcurrent therapy, and a hyperbaric oxygen chamber) almost has Jude back to normal.
About a month before the vomiting began, he had a suspected concussion that the local children’s urgent care cleared us on, but the assessments we’ve done through this injury rehabilitation clinic suggest that perhaps that is where it all began and the virus simply further inflamed the nerve. Who knows? The human body is incredibly amazing and complicated and unpredictable. He is currently down to only occasional episodes when he was vomiting 20+ times a day a few weeks ago. It feels crazy to say that I am seeing a chiropractic practice to treat my kid’s GI condition, but after a wild goose chase for answers, that is exactly what I am doing, and it is working. We are not totally healed yet, but it has improved. There are tests lined up for the coming months to rule out misdiagnosis and new complications and to take a closer look at any nutritional deficiencies that may be left behind after so many days of improper food absorption.
I said to my friend a couple of weeks ago that once my family was past this health complication, I would never again complain about my regular, busy, messy, sometimes overwhelming life.
Then last week came, and I began the week with some abstract worries about Coronavirus and ended it here inside these four walls with the same task that confronts all of us right now, waiting and watching and praying and sitting through this fear and discomfort.
This is such a weird season in my life. I’m just coming out of a dark period of a lot of tears and a lot of frustration with the medical system and a lot of worries about my son’s health only to see the same things playing out on the world’s stage now. Frustration with a system that is failing us and so much worry. I feel like one day I will look back and this timing will make sense and I will see what God was doing, but I do not see it yet.
All of us are learning lessons right now and absorbing this news in different ways, but it feels like for me, the same experience I have already had this year is echoing louder and louder to say Can you hear me? Do you see me? I’m thinking of that Pema Chodron quote again. Nothing goes away until it has taught you what you need to learn.
To be honest, I have mostly been on quarantine since January anyhow. I have been in the midst of a total paradigm shift in my own life, and now the world is requiring all of us to do the same thing. What if all you had right now is the space you are sitting in, the one you call home? What if you had to stop shopping and stop running and stop everything and just be still? What if you had to strip everything down to the basics and sit with all of it? What if the point is not to be productive but just to be here? What if you had to rely on others for help and remember that we are all connected, all of us, all the time?
Jude’s extended illness has forced me to strip everything down to the root, but here I am stripping it even more bare. I cannot shake the feeling that the America on the other side of this is not going to be remotely the same. It is scary now as we look to the unknown, but what if there is something good there? The recognition that public schools are completely necessary to the functioning of a thriving society, the understanding that all service workers need a safety net of insurance and sick time, the realization that maybe families need to be fed when they cannot afford it and not just because their kids are going to school. And look at how we have come together, how we have picked up pieces of this mess to coordinate community efforts from six feet apart and from the reaches of the wide internet. We can do so much more if we choose to. Why haven’t we been doing this already?
Health is such a gift. Nothing else really matters. I think maybe that is what we are all realizing, and what I’m understanding on both the personal and also the national level right now. What was my own little family’s health scare somehow paved the way for this global one to make its path into my life.
I can say with confidence America will be different on the other side of this massive health crisis because that is what crisis does for us. It shifts and moves all the pieces and makes us create something new of our lives. I am not sure what is on the other side of this scare for me, but I am determined to make it something good. And in the meantime as I wait, I am determined to keep chiseling away at what is here — to play board games or read, to clean out that space I have been avoiding in the extra closet upstairs, to write and create, to paint with the kids and take walks and watch movies and maybe remember that we are not what we produce or what we buy or who we are perceived to be when we are out in the world. Just being here is all that we are created to do, and that alone is a gift.
Mama the Reader 