Out of the Swamp (Part 2 of 2)

By “falling apart” I mean how you feel moments after danger has been averted and you are struck with how very close that call was. Like right after a car wreck when, even if everyone makes it out of the ER in one piece, you are still shook to your core thinking of alternative endings. Of course there’s relief, and joy that it’s over, and maybe even sorrow that it happened…but in our case, a wariness that it might not be completely over. Good guess when you are dealing with a chronic mystery illness.  

Despite all the joy of seeing her get better, I kept thinking, I just need a good cry all by myself. But I couldn’t cry. I even watched The Last King of Scotland, thinking if anything can make me break down, insanity, genocide, and torture should do it. But no, I took it like a trooper. Instead, a few tiny tears would sneak up on me at all the wrong times, like while watching sitcoms (seriously? Friends re-runs making me blubber???) or worst of all, when my kids were around. This kind of maternal meltdown, IMHO, should be private. But there was never time nor place. After all, I now had an eight-month backlog of work and neglect to slog through.  

Meanwhile, since our daughter was growing stronger and eating again, we planned a June trip to Florida. We arrived ready to swim in the Gulf, soak in the sun, explore a new climate, and just BE. Marco Island did not disappoint, but as you can guess, it still took a while (and a few drinks) to calm down. Hard to believe when you look at this view from our balcony:  

  

On the third day we boarded a catamaran to do some serious shelling on a tiny isle off the coast. Sitting on the tarp while Captain Shannon took us out on the open water, I thought, Ok, we are better now. With our arms wrapped around our kids, huddled as a family that had just weathered one bitch of a storm, I began to relax.  

Near the end of our trip, we decided to visit the Corkscrew Swamp Sanctuary. Now, if you’re from a swampy area you might not get this, but for me, taking a walking tour of a swamp had all the appeal of visiting a water treatment plant. I could not imagine how an oppressively hot and humid setting crawling with alligators and bugs could possibly end well. Even for a nature freak like me. Still, we set off in hopes of seeing real alligators, despite misgivings that there would be nothing between us and them but a boardwalk floating just a few feet above their heads.  

As we strolled, I admired the sturdy craftsmanship of the 2.25 miles of boardwalk the Audubon Society had built above the boggy floor of the swamp. It took a while to adjust to the hot, damp air, but I soon got caught up in the signs posted along the way that described the unique flora, fauna, and feathered creatures that dwell in a climate I had always regarded with creepy-crawly disdain. To me a swamp seemed a place where beauty is swallowed whole by the mysterious murk, never to be seen again. Sort of like the last couple seasons of our lives….  

After a mile, I began to think that maybe I had underestimated the swamp. Under the shade of bald cypress, strangler figs, and other unfamiliar vegetation, I slowed and let the others walk ahead. I listened to the various birds described on the signs. I noticed their songs were incredibly clear and loud. A few feet later a sign explained that sound carries well in the swamp. It was as if the swamp was reading my thoughts. Maybe it had something to teach me.  

Reading, listening, breathing, watching, I learned that a swamp is self-sustaining and vibrant, despite how the thick air seems to hang unmoving, stuck in neutral. It’s an ecosystem of deep, purifying renewal. Yes, beauty is swallowed here, but it is repurposed, resurfacing as a lovely, lacy fungus or a playful, dangling boa of Spanish moss. Yes, the swamp is a place of rapid decay, but as a result, the air itself is so rich with nutrients, it can sustain entire plant species without a single grain of soil. They just sprout up in the crooks of trees, taking all the sustenance they need from the invisible space around them.  

 When our daughter was so very ill, my mantra quickly went from “one day at a time” to “one half-day at a time”—that was often all we could handle. Then there were times when that shrunk to “one half-hour at a time.” But even in that terrifying morass, I could see God’s tiny light. Things we needed managed to show up right when we couldn’t hold on any more. Racing back to the hospital from my new job, or zipping up the mountains to get our other daughter while my husband did his shift at the hospital, sometimes the miracles were as simple as a gas station appearing just before my car ran out of gas. Or some doctor introducing us to the miraculous use of Benadryl to ease nausea when nothing else had ever worked. I began to lean heavily into my “Just in Time Jesus” as I nicknamed him. His mercies sprung up like air ferns in the most unlikely places.  

Strolling the boardwalk, the unease I had always associated with the swamp slowly gave way to respect. In a swamp, where the atmosphere is cloying, plant life blooms with a swift and generous beauty. I studied the swamp’s unique lichen, which is much like spilled paint, compared to the dry, shaggy type that grows in the Rockies. I had never even heard of red lichen, but there it was, among the life dotting every square foot of plank.   

Swamp water is black and glassy not to hide menaces, but because the tannins from the leaves that fall into it stain it like tea. In the “sanctuary” we were exploring, swamp water comes from rain, not springs or lakes, and that water rises and falls with the seasons, allowing new life to take hold during the dry spells. I read that an ecotone, that band where two ecosystems touch, such as where a marsh melts into a swamp, is a unique and fertile place for new life to spring forth. Many life forms exist thanks only to the ecotones of this world. Where one thing drops off, another thing emerges, and life goes on.  

John Bunyan had his Slough of Despond and I have my Swamp of Epiphany. Today, our daughter is as close to normal as we will get for a while. She will do great for days on end, then for reasons we can’t always figure out, she’ll have a setback. We still don’t know what the original illness was, and while we hope to get answers at the Mayo Clinic sometime this winter, we may never. I admit I can’t relax completely, and I’d still do anything to trade places with her, but I am not on the verge of a meltdown any more. I don’t know where this new path through the swamp will lead, but I do know that what we need most will show up on time. God is in His heaven—and our swamp—and that’s enough.  

You never know...and that's why they call it "faith."

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Out of the Swamp (Part 1 of 2)

About 8 months ago, our youngest daughter came down with a mysterious illness. At first it seemed like the stomach flu, but she grew sicker and sicker, lost weight, couldn’t eat, and never got better, only worse. Eventually she ended up in the hospital. Spent most of February there, then part of March. She couldn’t eat at all. For a few weeks she was on IV feedings, which means she had a PICC line, a catheter that snaked up her arm to just above her heart. It’s scary to see your child with tubes sticking out of her arm, even if you know it’s what’s keeping her alive, but worse to witness the necessary and excruciating scrubbing of said site.

A different kind of scary is when test after test, most of them repeats, comes back negative. Always negative. On the one hand you are so relieved it’s not the worst case scenario; on the other hand, it’s exhausting to still not know why your child is so sick. And subjecting her to test after test, some of them requiring anesthesia and biopsies…it’s a lot for a 10 year old to endure. If you could trade places, you would in a heartbeat. Instead all you can do is research, try to find an answer as fast as you can.

For months I spent hours every day, often more in the middle of the night, researching every odd and rare digestive ailment known to humankind. Imagining—or worse, guessing—is a different kind of stress than not knowing. Eventually I felt like I had as much info to go as any of the doctors we were constantly visiting to beg for help. We learned that medicine is an art as much as a science, and often even the most empirical guesses are nothing more than guesses. Trial and error. Failure is heart-wrenching to a patient and her family but nothing more than data to some doctors—so we also learned who not to waste our time with. Luckily we were blessed with a pediatrician and then a GI specialist who are devoted, brilliant, and work well together.

If you can't get through, go around.

In the meantime I completed applications to have her seen at specialty clinics across the U.S., which involved getting all her records to the right people, then learning how to wait. And wait. Pediatric medicine often requires different tests, specialty equipment, unique studies and, of course, overbooked specialists. My desperate search for answers turned into this artful groveling to try to speed her through the review process. Along the way I met mothers with kids who were even sicker. Some were in recovery and offered me great advice, even though I was a complete (unabashed) stranger begging for help. Others were now accustomed to the daily mix of struggle and triumph that raising a chronically ill child entails. All of them were incredibly brave, fiercely intelligent, and committed to their children in ways that people with healthy children can’t fathom. They have my undying respect and gratitude, and remain in my prayers.

In February our daughter tested positive, despite earlier negative results, for C. difficile, a nasty bacterial gut infection that produces toxins that can be fatal for seniors and are miserable for everyone. That diagnosis finally explained why she felt and looked like she was being slowly, more intensely poisoned. She was being poisoned, by those toxins, and it had likely been going on for months. It did not explain everything, however, including her primary illness.

The C. diff. detour was a three-week crawl through a swamp of misery—and that was just the treatment part. Meanwhile we diagnosed her with Postural Orthostatic Tachycardia Syndrome, or POTS, and we only figured that out because of a slideshow someone happened to send my husband. Thank God for that small but resonant miracle! POTS is something she may live with into her 20s or later, but it’s treatable with minimal medication and rather easy to manage.

Have a seat...it's gonna be a while.

Eventually our daughter learned to eat again, but only after being on a nasal-jejunal feeding tube for 6 weeks. It was a slow, frustrating process, but we are among the very very lucky. Today, our best guess is that a wicked virus attacked her autonomic nervous system and messed up her blood flow and digestive function but good. We have finally been accepted to be seen at the Mayo Clinic’s Pediatric Diagnostic Clinic, but the wait list is 9-12 months. Yes, you read that right: MONTHS.

For about a month she was doing great, eating anything and everything and holding steady. Lately she has become sick again, and we are desperate to get back to an equilibrium with the medicine, the exercise, and whatever serendipitous coincidence aligned the stars for her. In the meantime, we wait for a workup at Mayo.

Through the roughest part of this journey, I found I could not write at all. It was too intense to process on paper—and most days were an all-hands-on-deck experience. But just recently I realized I had written a lot during this trying time—email updates to family and friends and a medical narrative I created to plead our case to faceless medical review teams.

Now that she is moving forward, the overwhelming emotion is gratitude. God blessed us with so many kind helpers, gentle mercies, and nick-of-time miracles, it was truly humbling. So many people prayed for us and came to our aid…I can’t begin to express it. But something else happened. While everyone, including our daughter, was embracing her recovery, I was quietly falling apart.

To be continued….

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Um…Awkward….

You know that feeling when you owe a friend a letter or a call and you think, Oh, I need time for that. I’ll do that tomorrow. And then tomorrow becomes the day after tomorrow and you think, Wow, I really need some time for that letter, I will start tonight. And then you fall asleep, and the days go by, and your guilt grows until pretty soon you’re avoiding even thinking about it.

Yeah, that feeling. It’s been gnawing away at me that I haven’t posted in so long, but I’ve been dealing with an illness in the family. How quickly your world shrinks when someone you love is sick and you don’t know why. I’m confident that everything will work out fine, but Tom Petty was right when he said “The waiting is the hardest part.”

The holiday week brought some time to catch up on The Neglected, and so 2012 is off to a good start. I’m also preparing to start teaching at a community college, in addition to subbing at grade schools, so I’ve been sinking into that “back to school” vibe too. Much different when you’re the teacher, but the smell of those magic markers and the feel of the crisp edges of a new notebook make me feel like everything’s gonna be all right.

And a couple days ago I long-lost boomerang came home with good news: two poems I sent out back in May got published in Glass: A Journal of Poetry! Glass is a fine magazine that pulls together diverse talents and offers poems that resonate with you long after you’ve read them. I’ve been a fan for a while, so this was an honor.

And a sweet way to end the year. I hope it portends more of the same. Now to get back to submitting…rather than let another nagging feeling take root.

Wishing you a gorgeous, lush, vibrant 2012!

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