I knew I was finished, emotionally, for the day when I sat down for my husband’s birthday dinner and just silently picked up chopsticks full of noodles and shoveled them into my mouth.
First of all, I almost never clean my plate.
Secondly, I’m often chatting so much through a meal that I either forget to keep eating or I’ve taken so long that the food’s become cold and I give up on it.
This night, however, I finish all the noodles in my bowl and just leave a few pieces of chicken behind. The restaurant had been very generous with the chicken, a good problem to have.
We rarely stack events at the end of a hospital day, but today fell exactly on my husband’s birthday and there was precious little time to celebrate before we left on a trip. I thought that I would be able to handle it.
But we were nearing the end of a two-year course of immunotherapy treatment for my daughter and it seemed like we were all ready to be done.
There was a little too much going on at once for me. Wrapping up a week-long family reunion and then getting ready to go on vacation with my immediate family. During this trip, I’d need to do a Zoom job interview since I was also on the job market. Also, I had my own health issues, with appointments and treatments.
But the biggest challenge facing our family was cancer. It had been three years since the diagnosis and we were three months away from completing two years of immunotherapy infusions.
My daughter had borne up through this regimen with grace and forbearance. She began the first month of her first college semester highly symptomatic for a toxic response to one of her treatments. Two months in, we pulled her off the one medication and just continued with the second one, which still required making an hour-long drive, each way, to the local children’s hospital for infusions that they prepared for her upon arrival each time.
Today’s visit was a fairly straightforward one: oncology visit, blood tests, and then the infusion. Everything went relatively well. Because we were arriving later in the day, mid-afternoon, I was optimistic about getting a good parking spot on the main level, after other people had left for the day. This proved to be correct, and we triumphantly sauntered in and walked directly to the check-in table to receive our name badges that permitted entry to the Radiology floor.
When we reached that floor, we had the waiting room to ourselves. The nurse who took my daughter’s vitals was chipper and kind and we were ushered into a sunny room with a great view over a lovely part of the city. When I looked out the window, a hawk circled lazily overhead.
Staff immediately came in to get the process going or—as my daughter’s oncologist commented, with a smile on her face—participate in “social hour.” My daughter’s positivity was infectious, and she had connected with multiple staff members who always stopped in to see her whether or not they were working at her end of the floor that day or not.
However, after each person left, my daughter and I remained in the room in silence. I always tried to follow her cues. Did she want to chat? Was she tired? Hungry? Did she want to read the books that she brought? When she was socializing with the staff, I alternately joined in or kept to myself, allowing her to be the main attraction in the room.
I wasn’t sure what was underneath the silences today, and my mother’s heart grew worried. We also talked through various symptoms with her oncologist, and this was always a stressful conversation. The conclusion: the little twinges here and there were likely nothing and we’d do a more thorough investigation in a month when the MRI and CT scans were due. All was well. In fact, her lab results looked great.
Still, somewhere in the midst of this, I had the realization that I was carrying both her and my own emotional well-being. I couldn’t control the physical, but apparently, my subconscious thought that I should take responsibility for everyone’s emotional health. I think perhaps these concerns were lodged somewhere in the pit of my stomach. Or maybe in the tenseness of my jaw. Or the crick in my neck. All of the various places where I was lodging stress these days.
The Journey
Nothing had changed. We were in the same place that we’d been in for awhile now: prayerfully hoping that the treatment was doing what it was supposed to do. But we were realistic, and we saw the message boards from the few other people with this rare sarcoma. For many to most of them, treatment continued on and off for life. We wouldn’t know what to expect for a few more months now, but it was starting to feel long. How can you be simultaneously enormously grateful—grateful for the kindness of others, the expertise of the hospital staff, improvements in available treatments—and beyond tired that we were still in the midst of all of this.
We are not the only ones. I volunteer with other children with life-threatening illnesses (consider volunteering with Make-A-Wish—-it’s a great organization!). I see first-hand the stories of others, and all suffering is the same essentially. Different levels, different types, but we’re all united in this underlying brokenness.
I also have friends whose children have developmental disorders. Unlike me, they do not have hope that someday this will end. They know that it will not, because ending the therapies, the treatments, and the day in and day out challenges as well as joys would mean that the child was no longer present. So, suffering and parenting go hand-and-hand in these scenarios, all mixed together like a beautiful concoction of fluffy goodness juxtaposed against overly tart and somewhat distasteful flavors.
I know all this and know that maybe our situation isn’t entirely dissimilar. Or maybe it is. We don’t really know yet. Part of our burden to bear is the liminality of it (“liminal” is my 2024 word of the year, I think). The in-between space. We’re in between a known past of wellness, existing in a present reality that is a revolving door of hospital visits, and rapidly approaching the unknown future.
But, as I say when I try to encourage others living in this liminal space, we’re just signs and symbols of what is true for everyone. Yes, we may be more obviously facing a challenging present and approaching the next phase of who-knows-what. But, so is everyone else—all at differing levels, to be sure. But it is denial or willful ignorance to reject the truth of this. Everyone has challenges in the present and everyone is presented with an unknown future. These are facts. This is true, as uncomfortable as that reality is.
We seek to assert control in various little ways. I mistakenly think that by putting on calming music in the hospital room and inviting my daughter to lie down and rest, I can momentarily take a little bit of her emotional pain away. She doesn’t complain, but I know it must be there. She simply says that she’s tired, when things get difficult.
This is my first-born child, the one who—for some reason—I always became the most nervous about regarding every little illness. I’m a firstborn creating another first born, in all of our gifts and foibles. When she’d cough, as a child, I’d demand, “What is that?!” At the slightest sign of illness, I’d pull her aside and present a mix of home remedies and then enlist my husband to try to figure out whether one of us needed to take time off for a doctor’s visit. My children both know mom’s routine for What Happens When We Get Sick. Ok, if you insist on knowing, here it is: zinc lozenges, wellness tea, breathing in steamed water with a towel over one’s head, more tea, a steamy shower, humidifier in the room, extra vitamins, a store run for more cough drops and lozenges, elderberry syrup, etc. But for my daughter, I always had a hair more, shall we say, angst. My questions about her health were a little more insistent, my remedies applied with a little more neurotic energy. I don’t know why.
And then she was diagnosed with cancer.
Somehow both she and I chilled out subsequently. We do all the things, and we’ve shrugged off the angst. But perhaps it’s there, underneath. It’s in her asking her doctor, with persistence and intent focus, about specific twinges and pains. This is wise. We’ve learned the hard way, the very hard way, about advocating for oneself. But, it’s not easy or comfortable or calming to ask about symptoms to try to figure out what might be concerning or, at the very least, something that requires yet another doctor’s visit or a new specialist being added to the list.
And it’s certainly not easy for her mother to listen in and participate, with her doctor glancing toward me for verification and supplemental information at times. I haven’t seen my daughter for most of the summer. She’s over 18, and a thriving college student. But, I am still her mother and I am a mother trying to help her daughter through the cancer journey while also trying to figure out how to just make it through myself.
I don’t know what I don’t know, and I don’t know what is causing my daughter’s silence.
Once the treatment finishes, she heaves a sigh of relief and we exit. All of a sudden, she’s looking at pictures on her phone and chatting about her book. She was holding her breath the whole time, apparently. Also, she said that she was nervous about the one nurse who had struggled excessively with the IV the last time we were there.
Just one thing can set us off, it’s true. That’s how we know we’re at the end of our tether at this point.
It’s time to go on a well-needed vacation, even one that has an interview in the middle of it. We’ll have a three-week hiatus in-between treatment.
I write this a little as a tell-all. It’s hard to find the words to describe what this experience is like. Sometimes homing in on the various steps of first we did this, then we did that help to paint a little bit of a picture. None of us, not even me who is very, very familiar with plunging into my emotional depths to grab onto a particular emotional experience, then waving it around like the final item in some cosmic scavenger hunt, has a total handle on what exactly we are thinking and feeling at any given moment. The moments are too mixed, too ambiguous mostly. My daughter doesn’t have the luxury of half a lifetime of studying and diagnosing one’s own emotional state. I have no idea how one would even do that at her age while also attending to your own physical needs. So, she has to go through this relatively blind as a newbie in this adulting thing saddled with the extra burden of illness.
Yet, she has chosen wisely, like Indiana Jones at the end of the Holy Grail movie. She chooses joy in the midst of suffering, lifelong learning amid uncertainty, and connection over isolation. If occasionally she needs silence and rest, she deserves all this and more. I told her, as I told my son, that she doesn’t have to be “on”, that she doesn’t have to perform for our family, that she can feel and think authentically for herself. But this is easier said than done, and we also know that it doesn’t do ourselves any good to belabor negative feelings for too long. One could get sucked into this space. All we ask is that others not be too whiny around us, because this veers into the macabre.
There’s no moral to this message, except to speak out on behalf of mothers of children with major illnesses everywhere. These people are largely invisible, and sometimes we want it that way. Our attention is on our children, so it always feels a little like coming up for air when someone focuses attention on us. It’s disorienting, like trying to figure out which direction the beach is when you come up from being underwater at the beach. I do have some amazing people in my life who are keeping an eye on me, a mix of friends and family who do various little gestures, big and small, to keep me going. I’m so very thankful and am perpetually surprised each time, because my mother’s mind is rarely on my own needs.
But occasionally, for the good of the order, I need to focus on them, like putting on my own oxygen mask before attending to my child’s. I have to remind myself of this, when I surprise myself on the occasions when I plunge emotionally. It’s OK to take a breather. It’s OK to not carry it all. It’s OK that I wasn’t in perfect control today. I wish I could be—I so desperately wish it.
But we are human, and that means that we have bodies as well as minds. Right now, we’re very attuned to shoring up and healing one particular body while double-checking that the rest of ours are also still doing OK.
I’ll close with a prayer that I pray over my list of people I know with various health struggles. Amen, may it be so.
Lord, save us and we shall be saved, heal us and we shall be healed. Touch bodies and minds, hearts and spirits. The physical, emotional, mental, and spiritual—heal us from head to toe. You know how and where these aspects intermix, and I ask that in Your wisdom You provide the holy touch that makes all things new. Restore and reinvigorate. Grant peace and rest and, most importantly, walk very closely alongside us, I pray.
The world needs you - your honest, authentic written expression and belief in a God whose thoughts and ways are so much higher. You live what you preach. Thanks!