Kids are supposed to live in the moment. In fact, a few of the books I’ve read on cultivating mindfulness recommend using time with children as an easy way to dwell in the present. Instead of worrying about what to make for dinner or where to go on the next vacation, experts including Jon Kabat-Zinn advocate consciously engaging in playing or reading or doodling with your kids.
My son Andrew, who is now six years old, has definitely kept me grounded in the here and now. I was diagnosed with sarcoidosis when he was only three months old; a few months later, I learned I had a chronic, multi-organ form of the disease. Sometimes it makes me angry that I’ve never had the pleasure of being a healthy mom. My experiences as a parent are tangled with those of sickness.
When I think of Andrew’s infancy, I immediately conjure sarcoidosis memories as well. Nursing him was important for me—and not just because of all the health benefits Andrew accrued through my breast milk. I loved the bonding that came through nursing, and the weird pride I felt in being able to feed my child from my own body. Some of my fondest memories are of his small but sturdy body snuggled in so close to me that the lines separating his body from mine blurred. But I also remember frantically pumping breast milk in a Denver hospital bathroom, after I learned I had to get an MRI with contrast fluid in forty-five minutes. I’d have to wait 2 days for the contrast fluid to clear my system and be safe to nurse Andrew again.
Andrew’s childhood has been shadowed by the specter of my disease and its treatments. He can rattle off my drug names with alarming accuracy. He knows that Cytoxan is chemotherapy, and that chemotherapy knocks me on my ass—and thus makes me unavailable to him—for a few days. “I hate chemo,” he says every-other Monday night before I get chemo the next day. He also has tracked the disease’s course with more accuracy than some of my closest friends. The other day I was complaining to my friend Leah about ongoing abdominal pain. “It’s probably just the sarcoidosis in my liver acting up again,” I told her. Andrew, who passed by on his way downstairs, growled, “Your liver again! I thought we were done with the liver.” Apparently, he clearly remembered the liver biopsy three years ago that had not gone smoothly as the procedure opened a small tear in the organ.
We haven’t been able to take many trips that didn’t involve bringing me to yet another hospital and yet another sarcoidosis specialist. We’re lucky that my parents were generous enough to accompany us on most of these medical adventures, so Andrew doesn’t have too many memories of dingy hospital corridors over-illuminated by harsh fluorescent lights; instead, he recalls watching trucks and construction equipment with Grandma and Grandpa, swimming in hotel pools, and seeing the butterflies at the Natural History Museum in New York. When I have to go see a specialist now, he gets to stay at my parents’ ranch. While I’m getting scanned and meeting with doctors, he has cap gun battles on the open land, hikes to nearby caves for a picnic lunch, and challenges my parents to dozens of bicycle races. I am thankful we have been able to shelter him from some of the storms of my illness.
The mindfulness experts are right. Like other kids, Andrew has a capacity to dwell fully in the moment. And when I am able to silence my inner critic/planner/multi-tasker, I can slide into his slipstream and revel in the now. It’s not that we do anything particularly thrilling. I can’t even play outside very much, because I’m still in a bulky orthopedic boot to try to protect the bones in my foot that were weakened and then broken by sarcoidosis lesions. And the vertigo and blind spells caused by sarcoidosis inflaming my brain stem and cranial nerves make it unsafe for me to go walking. But Andrew doesn’t seem to mind being stuck inside with me. He likes us to sit next to each other and draw. We each create our own truck—or helicopter or bulldozer—but then we add details to one another’s. Well, actually, it’s mostly Andrew who adds zest to my careful renderings—a chipmunk perched on the bulldozer’s blade, a brilliant orb of a sun next to my helicopter, and a flower next to the chipmunk. He strenuously objects to me marring his drawings. We enjoy baking together. We’ve gone through phases—for a while we made challah every Friday for Shabbat; we had a pumpkin-cranberry bread month; chocolate chip cookies are always fun to make. Last Saturday we made hamantaschen (triangular-shaped jelly-filled butter cookies for Purim). It was a big job for me. I’m still getting my stamina back from the long hospitalization. And these cookies are tedious—we had to mix homemade dough; roll it out; drop filling in; shape the cookies into their unique triangular shape; seal all the edges with beaten egg; bake them; and somehow get them off the pan without them crumbling into several million pieces.
But Andrew made the job fun. He has a delightful imagination. At first, we pretended we were scientists mixing up a “volcanic creation,” as Andrew put it. Then he became enamored with the canned cherry pie filling we were using in some of the cookies. We stopped being scientists and instead were bakers at a road-side cookie stand. Then, Andrew decided that merely dealing with the goopy cherries wasn’t enough. No, we had to be a cherry man and a cherry woman. He was Rick Cherry and I was Mom Cherry. As far as I could tell, we weren’t giant cherries exactly, but were living agglomerations of the pie filling—“sloppy and gloppy,” Andrew told me. I’m still not sure what life as Mom Cherry involved (besides talking in a high-pitched voice). After Andrew turned first the cat, then my husband, and then the entire house into Cherry creations, it made more sense. We could pretend to eat anything in the house because it was pie filling.
When I am with Andrew, I pay more attention to everything. He notices details—nuances in an illustration in a book, an especially nice view of Mount Helena as we run errands, the quality of light as evening approaches, the sound of words. His observations bring me out of the nebulous swirl of my thoughts and ground me in the here and now. I’ll follow his lead and truly see the mountain in front of me.
Andrew is also re-shaping the way I view and value time. I am an inveterate planner and organizer. Very few things rival the satisfaction I get from making—and completing—a complicated “to-do” list or agenda. Maybe I got into the habit of planning and organizing each hour of the day because of my work as a free-lance writer. Since I usually work alone and have to impose deadlines on myself, I’ve grown accustomed to plotting my work time and free time. Ever since I got sarcoidosis, I’ve wanted to plan all the more furiously. Both the disease and the treatments I get to fight it exhaust me. The chemotherapy is particularly problematic. I “lose” days after each dose to fatigue, nausea, and vomiting. It’s rather like getting a stomach flu twice a month. I put pressure on myself to accomplish in one week what used to take two. I can get almost fanatical about managing my time. When I have decided to spend an hour resting or writing, I get annoyed when I have to change direction and, say, talk on the phone.
“What shall we do today?” I used to ask nearly every Saturday. Now that Andrew is in kindergarten all day long, his free time is vastly diminished. I thought he would value his weekends more and want to fill them with the activities he can’t do during the week. Although I would feel more comfortable if I could construct a timeline for each weekend, Andrew is content to putter around the house and let the day unfurl, like a flower opening its petals in sunlight. It’s not that he is agoraphobic and doesn’t want to leave his home. He loves playing with friends, participating in his soccer games, going to events at the Children’s Museum, or hanging out at the library. Rather, he’s reluctant on a Saturday morning to schedule these activities. When I actually thought about this—instead of nudging him to make a plan—Andrew’s attitude made sense. His week days are thoroughly regimented with school and after-school activities. If I had my way with weekend planning, his open Saturdays and Sundays would be just as structured as school days. If we lurched from activity to play date to errand on an arbitrary schedule, I would be taking away the freedom of his downtime. Once I stopped trying to herd Andrew and actually hung out with him, I noticed that he hasn’t yet started prioritizing his activities based on external markers. By this I mean that he doesn’t value playing soccer or attending an art day camp—activities that parents and teachers approve of for all the skills they develop—more than riding his bicycle in the driveway or drawing at the kitchen table.
Instead of pushing Andrew to make a Saturday schedule, I consciously decided to try his way. It was—and remains—tough for me not to tame all that unfettered time. But when I quell my anxiety and go with the proverbial flow, I have a lot of fun with him. It is refreshing to be with someone who really does what he wants to do—not what he thinks he should do, or what other people would do, or what is proper to do. Playing “Star Wars” with Legos—which involves pretending to be a character from the movie and then flying Lego space ships or launching attacks in this persona—is a ton of fun. So are making baking soda volcanoes in the kitchen sink, using Play Doh to make monsters, and digging deep holes in the ice and snow in front of our house.
Once I let Andrew teach me about open time and the myriad ways to fill it on the weekends, I began to try to apply these lessons to my week days. I haven’t thrown away my Blackberry, and with it my calendar, memos of goals, and numerous lists of tasks to accomplish. And I don’t plan on chucking them. But I have tried to look at my scheduled activities with honesty—and with compassion for myself. I even went so far as to hire a life coach. At first I was a little embarrassed to pay for someone to help me figure out better ways of living. But the money I spent for phone sessions with Sandra Ahten was one of the wisest purchases I’ve ever made. Our focus was primarily on giving me tools to lose weight, but Sandra also pushed me to prioritize my goals and then establish realistic plans to work towards achieving them. With Andrew’s example and Sandra’s expertise, I stopped blindly following old routines. Did I actually want to start taking a yoga class? Or did I feel like I should take a yoga class because many of my friends do, and because yoga is universally acknowledged to be good for you? What about writing in my journal? I used to have enough time and energy to write a few pages every day. This was a wonderful way to generate new ideas for writing, sort through problems, and to sometimes vent on the page. But I have so little time to write at all these days. My neurosarcoidosis has made reading and writing difficult. Did I want to devote some of my precious “word time” to my journal? When I had finished a first review of my schedule, I was shocked. Many of the tasks in my calendar were for activities that I did only because I thought I should, or because they were old habits (like the journal) that didn’t fit into my current life.
In his book, Coming to Our Senses, Jon Kabat-Zinn wrote: “What is required is nothing special, simply that we start paying attention and wake up to things as they are. All else will follow.” This is an admirable goal. By edging closer to embracing “things as they are,” rather than desperately hoping and demanding for them to be “as they should,” my daily life improved exponentially. As I explained in yesterday’s post, I pushed myself to stop expending my limited time and energy on an uncertain future and instead concentrate on making the most of the day I was living. Spending time with Andrew really does help me stop over-intellectualizing and over-planning and simply play—or bake cookies, or watch a movie, or build a tower of blocks.
However, Andrew can’t apply his natural gift of present-mindedness when it comes to my disease. He struggles mightily with it. I can’t imagine how difficult it must be for him to make sense of this sarcoidosis that has been his bed-fellow since birth. Most adults have less of a grasp of what this sickness involves than Andrew does. Nevertheless, despite his impressive vocabulary and his memory of all the different medications I take, he is still just a young boy. I didn’t realize until a few months ago that he was somewhat afraid that he could catch it from me. He has since come up with a nifty way to explain auto-immune diseases: “Your body’s armies have gotten confused and don’t know who to fight. They are attacking their friends instead of bacteria or viruses.” And he grasps the consequences of all the immune suppressants I take in the hope of stopping the disease’s rampage. “It’s like your body’s army has gotten really lazy,” he said. “All the soldiers are taking naps or watching movies and don’t care about invaders.” Yep, that sums it up nicely.
While I have been pushing myself to apply the lessons of not structuring the weekend to my disease, Andrew resists this shift. I have been moving slowly but inextricably away from seeking a cure for sarcoidosis. As I wrote yesterday, it is not because I don’t desperately want to be cured. But I don’t want to wait to be cured. I was deeply moved by Elizabeth Edwards’ Resilience—a book that lyrically and thoughtfully explores how to deal gracefully with adversity. Her advice to accept the new reality created by illness or other challenges, and then to live as fully as possible within the new boundaries of this changed life, resonated deeply. Instead of waiting to get my “old” life back, I needed to get acquainted with my new life and discover how I’d live in it.
My little boy just wants his Mommy well. He is fixated on me being cured. When he was younger, one of his nannies told him every day that the chemotherapy would cure me. Her intentions were good, as were my mother’s when she devised a “chemo chart” that counted down the number of Cytoxan infusions left in my regimen. Also, Jay and I have often talked about going to China “when Mommy’s well.” And I’ve wanted Andrew to know what I used to do, before I gained one hundred pounds on massive doses of prednisone. So I told him about the bike races, the hikes, and the traveling that were part of my life “when I was well.” Not surprisingly, Andrew wants me well. Haven’t I followed the doctors’ orders and gotten chemo? Haven’t I stayed in the hospital when the doctors want me there? So why isn’t Mommy well? He was furious when I had to go back to getting chemo every-other week and stop tapering both the dose and the frequency of my infusions. “That’s not fair,” he screamed. It sure isn’t.
I’ve been trying to shepherd him out of the shadows cast by the looming fixed points of “Cure” and “Sickness.” When he talks wistfully about doing some activity or another after I’m well, I talk gently about not worrying about whether I’m well or sick but instead to think about the day we have together and the many things we can do in it. I want him to see what is possible now, instead of fixating on where I fall short and how much better life will be when I’m cured. He is reluctant to let go of this black and white world. I don’t blame him; it’s a constant struggle for me, too. Last weekend, when I was feeling much better than I had in weeks and Andrew and I baked hamantaschen and I cooked complicated Thai food for dinner, Andrew beamed at Jay and me across the table. “I’d say you’re over eighty percent well, Mommy,” he said proudly. I didn’t want to tell him it’s “wrong” to concentrate on a cure, that very few of us are ever one hundred percent well, that we begin to fall apart and move towards death the moment we are born. No, that would not be helpful to him. So I blathered again about trying to enjoy every minute we have together, about not spending time worrying how well I was, or when I would feel better. Of course these are exactly the same lessons I’m trying to learn, the same precepts I struggle to accept.
I tell myself that growing up with a chronically ill mother won’t damage Andrew; I tell myself that both he and I can move into the more realistic (but more frightening-looking) world of truths that are neither strictly black nor white but are foggier and greyer; I tell myself that we can learn from each other. I can’t imagine surviving in Chronic Town without Andrew. Because of him I want to keep fighting for a cure. Because of him, I won’t give up the vision of me being well.
One of the ways that Andrew helps make life with neurosarcoidosis livable is by pushing me out of bed and into a world of play, imagination, and ongoing adventures. I don’t need to be one hundred percent well to open myself up to the miracle of my son. I just need some Star Wars lingo, the willingness to pretend we’re on a spaceship headed for the planet Zorbidor, and the patience to build a tower, no matter how many times the cat—or my disease—knocks it down.