Quiet Courage and Small Moments

I love to put a microscope on small moments of change and growth and empathy and courage that, because they are not flashy or huge, often go by unnoticed.

Chugach, Bears and a Suburban Mom

~ Kristin DeMarco Wagner ~ Leave a comment
Bears
These were bears we saw from a bus, several hundred yards away. When you know you’re protected, they’re a lot cuter. Awww.

The first Saturday morning of our family vacation found the four of us at the Albert Loop trailhead near the Eagle River Nature Center of Chugach State Park, Alaska. This was supposed to be an easy, well-kept, three mile loop that would take us past crystal clear streams to a spectacular view of a mountain valley. We assured our nine and seven-year-old that they would be able to handle the hike by showing them through phone apps how far we had hiked other days: one and a quarter miles around University Lake next to our hotel, one and a half miles on the Tony Knowles Coastal Trail in Anchorage. Just wandering around the fourth of July fair was probably a couple of miles when it was all said and done. We all felt pretty confident.

We showed up about an hour before the nature center actually opened and read the notices pinned to the door to get oriented. There were bears nearby, and what we needed to do was to stay together and stay loud. You never want to surprise a bear, but he will steer clear of you if you are noisy and generally annoying. If a bear approaches you, you should stand your ground, and never ever run as they may begin a chase. Another chart explained all the reasons why standing your ground is helpful. A guidebook I had assured us that only polar bears stalk humans, and we were thousands of miles from polar bear habitat. As a last resort you could use your bear spray if the bear charged. We didn’t have bear spray (before researching this trip I wondered if bear spray was for spraying on ourselves to repel bears or if it was for spraying at the bears-for the record it’s something you spray in a bear’s face).

I

Got

Nervous.

We live in the suburbs of Chicago. When I camped as a little girl the most you had to worry about was a raccoon in your tent. A goose coming at you aggressively. A squirrel getting a little too familiar with humans and peeing all over your gear. No bears. No moose. Nothing really… deadly.

And here I was about to march my kids through bear territory for a vacation memory. Without a guide. Without other people on the path. Without bear spray (God help me, if I ever had to use it I’d probably spray myself in the face instead and just be putting a peppery garnish on the bear’s next meal).

But, I do tend to get anxious when there is nothing really to be afraid of. My husband looked like he was still game, so I swallowed it down and we started off. He didn’t look nervous until we were hemmed into a narrow pathway with very high grasses on all sides of us.

Up until that moment we had been talking casually, searching the trees and shrubs around us for less intimidating wildlife. Once we got to the grasses the need to keep noisy became something we both felt strongly about. The boys were confused as to why we needed to keep chatting about nothing, so my genius husband got them talking about the app “My Singing Monsters”. I swear to you that they did not stop talking over the next hour and a half. About two minutes into the boys talking, I realized that they would keep us constantly conversating, but they weren’t particularly loud. I added in claps, loud cheerleading claps with an ever-changing rhythm. We trudged on, past the grasses and through thickets of trees and mosquitos, scaring away every animal within earshot. Except a Great Horned owl. He did, however, seem annoyed.

About three quarters of a mile in we came across a path sign saying that the normal trail had been washed away by recent rainstorms. We could retreat or follow a bypass route. Hoping that the bypass wouldn’t take us back into low-visibility grass, we stomped forward. The trail became a mass of tangled roots that we couldn’t ignore, so our attention became divided between watching the forest and watching our feet. I clapped even louder and faster, exhorting the boys to be careful as we still had a long ways to go and we could not carry them if they got a twisted ankle. My husband was leading the way, and the boys followed him and I brought up the rear, listening to chatter about how to get new monsters on an app and clapping furiously “We will, we will, rock you.” This was definitely not the serene, life-affirming communion with nature we had been promised. At one point I know I was singing Macklemore’s “Ceiling Can’t Hold Us” at the top of my lungs.

Then off to my left I heard something. It sounded like the loud exhale of a very large creature at about the height of my shoulder and ten feet away. I tried to explain to my husband that I heard something. He looked around, decided he hadn’t seen anything and kept going. Between the mosquitos and the large mammal I was sure was right next to me, I wasn’t about to stop and get super quiet to find out what it really was. (Later my husband would confess that he looked in the trees far away, not the shrubs near me, and excitedly said, “Aw man, I wish you had explained where to look, I bet something was there, that would have been awesome!” to which I replied, “Are you insane?!?”)

We advanced on a bridge and were able to relax for a moment, me shaking out my hands, my husband asking the boys to pause on the “My Singing Monsters” talk for a second. There were crystal clear streams, and interesting birds, and most importantly less trees so we could tell that at least here there were no bears within a hundred-yard radius. We took pictures and trudged on.

Finally we finished, unscathed if a little jumpy. The nature center was finally open and we overheard a worker explain that lots of people saw black bears on the path just in the last day or so. Later on I would tell my husband, “And no one will see any today, you’re welcome other hikers. I did the heavy lifting of scaring them away for you.” He guessed that they were probably the sort of people who were hoping to see a bear in his natural habitat. To that I shrugged and gave a look as if to say, “Sucks to be them, I’m all about the self-preservation.” And I’ll be damned if some hikers think that them seeing a bear is more important than me not seeing my baby boys being eaten by black bears on a family vacation.

We ate granola bars and went to the bathroom and set back out for the half-mile hike that EVERYBODY takes. A lady in a skirt and flip-flops preceded us, holding her iPad up to take pictures on this fifteen minute, totally cleared path. A bunch of other tourists like us walked up and down the trails, totally sure that they would not be part of a bear attack that day. And we were finally able to get quiet for a second and actually enjoy the view.

Chugach.JPG

And as much as I was eventually teased for looking like a crazy lady, clapping and yelling through a state park, the kids and my husband and I all decided that that was enough adventure for us for one day. Possibly for the whole summer.

Traveling While Chronically Ill

~ Kristin DeMarco Wagner ~ 2 Comments

Alaska Books

This trip was supposed to happen last year. We wanted to go to Alaska last summer, but we didn’t. The reason sounds spoiled and selfish when I explain, “Well, we didn’t have quite enough frequent flier points to fly first class, so we waited another year.” I sound like a twit. But I really struggled with being okay with flying six and a half hours without guaranteed food, without a guaranteed bathroom, without space to stretch. I have chronic illnesses and I can only push myself so far before I collapse.

It happened when we went to Puerto Rico two years ago. A four and a half hour flight with barely any food left me feeling sick, so sick in fact that my body cramped and lurched in the hustle of a 90 degree airport and I nearly passed out when we finally stopped and ate. On that same trip, which I do recall happily as one of my favorites, I threw up one meal where I was assured there wasn’t any dairy (but I’m pretty sure there was), and had to turn around on a rain forest hike because I felt like I couldn’t breathe from anxiety and humidity. I spent a lot of afternoons recovering from busy mornings.

Last year, in Wisconsin, I had to take an impromptu walk when my muscles cramped up so painfully I was going to get a migraine. A few times I had to prepare and drink a protein shake in the middle of the night because my blood sugar went too low.

Three years ago in Kentucky I was up in the middle of the night crying because my body hurt so much.

I am packing for Alaska now, and each item I put into a suitcase reminds me that I have to plan for the inevitability that at some point on this trip, my body or my mind will fail me. It is going to happen.

I keep my prescription medications, glucose meter and supplements in my carry-on bag. I cannot afford to lose these items. Also in the carry-on will be a 12-pack of dairy-free protein bars that can act as meal replacements or a quick fix for low blood sugar in an emergency. One of my few precious fluid ounces will be my Flonase.

One of our large suitcases holds winter jackets, gloves and hats. In some parts of Alaska it’ll be in the fifties and rainy, and my body cramps up wildly when the temperature drops too quickly. My ergonomic pillow will also be in that bag, so that I don’t wake up with back spasms each morning.

One bag will contain our guidebooks in which I have researched which restaurants near our hotel will have a diverse enough menu that I have a chance of finding dairy-free food. I have a grocery list and the address of the nearest Anchorage Target ready for when we land so that I can get enough non-perishable snacks to last me on a twelve hour bus tour of Denali and a 6 hour glacier tour out of Seward (lunch will be provided, but of course it all has dairy and if I go too long without eating at all I might pass out).

I bought seasickness bands for all of us because we’ve never been on the open ocean and I can’t handle being sick for 6 hours at a time.

We have backpacks, but I have to make sure I don’t overload mine, or my shoulders will cramp.

I can’t wear flip-flops anywhere where we will have to walk a long time, because my legs will cramp and my feet won’t uncurl.

I need to have ibuprofen available at all times, because even a storm rolling in can push me into severe pain  (I have been checking the weather obsessively to try to steel myself).

I will bring make-up because there will be times I get very sick, and I don’t want to look very sick in our vacation pictures forever and ever.

I will bring my notebook with all of our information everywhere we go, because when I feel sick sometimes my brain goes foggy. When that happens I can’t remember simple words, nor can I figure out how to navigate my normal life much less a brand new environment. Knowing my brain is unreliable is scary, and then my anxiety kicks in making it even harder to take care of myself and small children.

Sigh.

All in all it sounds as if traveling is more trouble than it is worth. But if chronic illness has taught me anything it is that anything you want in life is going to take work. An uphill battle just means that the view from the top of the mountain is going to be that much more spectacular once you get there.

Puerto Rico was amazing and tropical.

Wisconsin gave me time when I could just enjoy being with my kids without nagging them about cleaning up toys or doing homework.

Kentucky gave me a chance to see family I love dearly and wouldn’t get to otherwise.

And Alaska? I have never had the chance to see anything like it. I don’t live near mountains, or the ocean, or moose or bears. I might never get the chance to see these things again. I want to see my kids’ faces light up when they touch a glacier, and my husbands eyes widen when he sees an orca. I want to feel the weight of a fishing pole as my son hooks a salmon. I want to smell salt-spray. I want a chance to see Denali.

I want to prove for myself that the trouble, the pain that goes into everyday life, and the pain and trouble of reaching for the extraordinary is always worth it.

Alaska Clothes

Orlando

~ Kristin DeMarco Wagner ~ Leave a comment

FullSizeRender (3)

When horrible things happen I want to circle the wagons. I want to take the people I love and hold them next to me. I begin to imagine a new life where I take my children to the highest loneliest mountain cabin to keep them away from the world, or at least the world of humans.

The day of the Newtown shootings we were packing our bags to go downtown, to see the Christmas tree at Daley Plaza. I spent the day with a hole in my heart and a fake smile on my face trying to make our trip fun and breezy. It was meant to be a time for my two boys to explore the marvel of Chicago, the wonder of what can happen when millions of people come together to build and create. I hid in my heart the knowledge that just one stranger coming together with one small safe school could destroy, could obliterate everything. I don’t want my children to know that.

Today I dropped them off at camp and am relieved for a few hours to grieve for Orlando, away from having to explain why I am grieving. I am not hiding them away from the world, but I am hiding them away from the hateful things I have seen, read and heard. There is a deep pit of disgust in my stomach knowing that there are people in my own country who have said, of innocent people being murdered, that because they were gay they deserved to die. I am scared for my Muslim friends and neighbors who must have heard the identity of the shooter with a horrified gasp, knowing that they would be put on trial for crimes they did not commit. I am furious that a Republican “friend” is almost gleeful that the shooter was a registered Democrat because that “proves” something. I am enraged that people who want to restrict gun control laws are now saying, “This guy was on an FBI watch list and we didn’t stop him?” Our government’s hands are tied, we cannot block even highly suspicious people from access to guns because that might restrict the rights of responsible gun owners; the CDC is not even allowed to study what might possibly cause so many gun-related deaths because Congress will not allow it. We aren’t allowed to even mention limiting access to military grade guns or extending background checks, because, we are told, it is a slippery slope and all guns would be pried out of citizens’ hands. If we suggest ugly homophobia may have contributed to this, we are pushing some sort value-diluting agenda. I want to scream. I don’t want my children to see me scream.

Because I want to have a plan when I see them again.

I want to review what I have tried to instill in my boys. Have I taught them to celebrate love and to be as wary of hate as of a rattlesnake? Have I made sure to teach them to love people both similar and dissimilar to them? Have I told them that when horrible things happen people are scared and want that fear to subside-which means they may hurt people in an effort to feel safe themselves? Have I taught them that people are capable of horrors, and that stemming those horrors is often the responsibility and duty of ordinary people bearing witness and being a force for good? Have I taught them that we should grieve, but we cannot let grief overwhelm us because our ability to make the world a better place would be stunted? Have I taught them that they matter, and that what they do day in and day out can change the course of history? That drops of kindness in a bucket, once enough have gathered, will spill over and cleanse us all? Have I taught them to speak up, and taught them that it is hard work to do so, and that hard work is often necessary in life?

If I have not done these things, I haven’t done enough to help. I need to make a plan to teach them these things. This is my path forward, the only thing that keeps me from hiding myself and hiding them so far away that no one can touch them. A life without being touched by another human being isn’t a real life. We have to figure out how to live in this world one way or another.

Essay at Quail Bell Magazine

~ Kristin DeMarco Wagner ~ 2 Comments

Dusk

 

Hi Everybody!

An opportunity came up  with Quail Bell Magazine to submit essays to them about summer nostalgia. Since previous submissions were fine (I checked and double checked) I sent in this blog post from last summer: Night Light. It is about summer bonfires and what we learn on the edge of darkness and light. They picked it up and published it online just in time for the holiday weekend!

I’m ready to welcome summer, and I am excited to be published where (according to their tagline) “Fairy punks, feminist witches and quirky birds are welcome”.

Hope you are able to check it out!

Love,

Kristin

 

In a Land of Twelve Kinds of Cupcakes…

~ Kristin DeMarco Wagner ~ 2 Comments

IMG_3031

For my younger son’s seventh birthday we had an experimental bake-off as one of his presents.  He is always coming up with flavor combinations he wants to try, be it a lemon peanut butter cup (which was actually amazing) to an apple orange soymilk smoothie (a lot less amazing). He has wanted to experiment with cupcake flavors forever, so when he got home from school we had a whole table of ingredients and sprinkles and frosting ready to mess around with. We whipped up basic vanilla and chocolate batter and set out all of our extracts (vanilla, almond, peppermint, orange, lemon, coconut and anise) all of the fruit in the house, nuts and candies and toffee bits and chocolate chips and marshmallows and food coloring and Teddy Grahams.

He was beside himself. The four of us, him, me, my husband and my older son would make three different experimental flavors each, and we started plotting and planning and dicing and mixing. In no particular order we ended up with…

  • Peanut butter-banana-chocolate with chocolate frosting
  • Lemon-banana-vanilla with yellow lemon-vanilla frosting
  • Maple-pecan-vanilla with cream cheese frosting
  • Chocolate-marshmallow with chocolate frosting and Teddy Grahams
  • Peppermint-chocolate-sprinkles with chocolate frosting and holiday sprinkles
  • Vanilla-strawberry with vanilla frosting and red sprinkles
  • Chocolate-Rice Krispies with purple-tinted vanilla frosting
  • Orange-chocolate-chocolate chip with orange-tinted vanilla frosting
  • Vanilla-almond-cherry jelly bean with pink-tinted vanilla frosting and a red jelly bean
  • Lemon zest-chocolate chip-vanilla with orange-tinted vanilla frosting
  • Vanilla-orange-pine nut-freeze dried strawberry with orange marmalade vanilla frosting
  • Classic chocolate with teal-tinted peppermint vanilla frosting and pastel sprinkles

The cupcake production was going full tilt…until it came grinding to a halt. In the midst of us all being excited about trying our cupcakes out for dessert that night, my husband casually mentioned that we could have friends and family test them out the next day at the huge family birthday in our little guy’s honor. That stopped him dead in his tracks. He suddenly refused to do any more – even though he had only come up with two of his three designs. Even though he had been so bouncy before. Even though the only reason we had to come up with this idea was that we knew it would make him extravagantly happy. He stopped.

We should have known. Our seven-year-old is terrified of other people’s reactions to his creative work. He has been known to throw Lego creations when they don’t work out, or to literally not move once he feels he is being watched too closely. He dances joyfully at home and messes around with a guitar, but the thought of taking lessons for either paralyzes his fun.

He sat angry on the couch as first I tried to coax out of him what was wrong, then his father took a turn. Eventually my husband was able to get him to admit that he was worried other people might hate his cupcakes. We first reassured him that people would love them, and if they didn’t it would be okay. When that was met with a skeptic scowl, we then reassured him that only our little family of four would ever taste them if that would make him happiest. My husband got him to design his last cupcake-the classic chocolate one with the elaborate topping.

 

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He is my child, for sure.

I am the one who procrastinated on writing papers until the last moment because if they turned out badly I could blame it on the time crunch. I am the one who was given an opportunity to write the introduction to an online curriculum series in college and turned it down because it made me too nervous. I am the one who decided I would rather be “well-rounded” than put all my energy into ballet. I am the one who got solos, but would then show up to voice lessons and even competitions woefully underprepared. I am the one who refused to let anyone coach me on my monologue audition I would perform just once for over twenty colleges’ theater departments.

Sometimes my fears honed my actual work into a fine point – my almost late papers taught me how to get an “A” even with limited time by using my (not-often-used) laser focus, my monologue got me admission into ten different theater departments. But then I kept shooting myself in the foot. I didn’t go into theater for fear of a lifetime of rejections. I don’t dance or sing anymore except in my own kitchen. I still write though, and I am trying for my youngest to show him that putting your creative work out there in the world is incredibly difficult, especially for him and for me, but that it really is the only way to be happy. It is the only way to be true to yourself, to be honest with who you are and what you bring to the world – putting your work out there for other people to see.

The beauty of living in a land with twelve kinds of cupcake is that you haven’t put all your hopes and dreams into just one cupcake. When you make just one, you are scared of your aunt who doesn’t care for chocolate, worried about the cousin who is allergic to nuts, terrified that another cousin will think it is too boring or that your grandpa with think it too crazy or that your grandma will say she likes it even if she really doesn’t.  When you have twelve different kinds of cupcakes, twelve experiments of flavor and texture and color it is okay that the jelly beans fell out of the bottom of one but left a delicate delicious flavor. It is okay that the peanut butter banana was too dense, it’s a great surprise that lemon and banana together is light and airy. It is more than okay to make a classic chocolate cupcake perfectly simple and beautiful decorated.

I am trying to take my own lesson from this. Right now I am grateful I am letting myself send so many cupcakes into the world, because I am less worried about each one being perfect.

I have, out there in submission-land and in no particular order…

  • A very short piece about school shooting fears
  • A very long piece about a hurricane evacuation while I taught high school
  • A medium piece about being mistreated as a patient with chronic illness
  • A rewrite of a blog piece about speech delays, open heart surgery and one-syllable words
  • A rejected piece about science fairs and art that turned into a blog post

And

  • An accepted piece about baby food, insecurity and watermelon

 

Eventually, in the sixth hour of his family party, our youngest let other people try out his cupcakes, once the big cake had been served, once the numbers of guests dwindled and he felt happy and content and comfortable with sharing his creativity. I think it went well, and I hope both he and I remember that while sharing can be scary, there are tricks to make it less so. And, ultimately, even if you are temporarily paralyzed with fear, moving forward anyways is worth it.

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Play

~ Kristin DeMarco Wagner ~ Leave a comment

Play

A few months ago I had to put a writing project on pause.

It was going to be an essay about my first year with an undiagnosed pain and fatigue disease. In my head I had named it the year everything almost fell apart. Everything was in tatters, held together with the barest of threads. I felt like, in our little family, that I held all of our lives in my arms, while my body felt like it was literally being ripped limb from limb. My boys were just four and one, and on the heels of the recession my husband was traveling internationally almost every week-making sure to do everything that was asked of him so he could never be seen as expendable.

I paused my writing because I suddenly didn’t have the distance I needed to delve back into that year. A new undiagnosed problem began taking over, and emotionally I didn’t think I could relive “The Year Everything Almost Fell Apart” in real time and in retrospect all at once. I am still undiagnosed, but thankfully have started to be able to manage the problem so that I can get back to normal life.

And the story has started knocking on my door again. It won’t leave me be. The year, the whole year, wants to have its story told. Every time I try to divert my attention to something lighter, something fun or frivolous or at least shinier and less tattered, the year comes back. It looks at me the way my oldest son did at the time, wide eyes, furrowed brow, sadness that shouldn’t weigh down such tiny shoulders, asking me to make sense of everything. To please put life back in order, to explain why and how things went wrong and how to fix them. I couldn’t for him then, but the year is asking me to please do so now, to make amends for failing him.

Notebooks 2010

These are my notebooks from that year. Each post-it note is flagging a journal entry with a clue to my illness. The pages in-between are my journal entries describing the different colors suffering took for each of us, the way thirty-year-olds and four-year-olds and one-year-olds process fear and uncertainty and sadness and anger. It’s time to read them again. It is time to try to tell the story of a year in a few thousand words, so that it can be put on a shelf, ordered and meaningful and done. This will take time, but what choice do I have? The year won’t let me be.

Adrenaline Nights

~ Kristin DeMarco Wagner ~ 5 Comments

Blood sugar

I am up again in the middle of the night. That makes, I don’t know, twenty or so nights in a row. It’s the hypoglycemia, low blood sugar waking me up for a midnight feeding and sometimes again at four AM. Like having a squalling newborn. The exhaustion in between feedings makes it almost impossible not to pass out immediately, and on those nights I get more sleep. Occasionally adrenaline has done some of the work to raise my blood sugar for me, but then it keeps me up like I had done moonlit espresso shots. Tonight is an adrenaline night. The first few adrenaline nights, when I think about it now, astound me. Each time I had thought I had heard one of my children yelling for me, a loud “MOM”, the kind that accompanies a kid who suddenly realizes he is going to throw up right that second. I would jump out of bed, run to the boy’s room and realize that both of them were one hundred percent sound asleep. It happened once after I knew I was waking up with lows, and I marveled at my brain’s ability to jolt me awake for my own good. Pretty clever, if you ask me, using auditory hallucinations to ensure I didn’t just slip into a coma.

Adrenaline nights wake you up with a jittery, nervous stomach that make anxiety unavoidable. The hours before you are able to sleep again double and redouble the anxiety, and now you suddenly have hours of insomniac time to fill. All by your lonesome. In a spooky, silent and dark house. With access to Google. The first few adrenaline nights were filled with research, scouring reputable medical sites and not so reputable message boards for the answer to the questions, “Why is this happening to me?” and “What can I do to fix this?” Once my bloodshot eyes burned out from the glare of the computer screen, I would refresh them with copious tears the result of other questions, “What if?” and “Why me?” This cycle sometimes lasts four or five hours, before the adrenaline that woke me really leaves me be.

Time can make it better, experience with the adrenaline nights makes it better. I don’t research anymore. I cycle through Facebook, then Pinterest, then Buzzfeed, then Instagram, then the miniature food jewelry pages on Etsy. After those run out it becomes time for an old DVR’d CBS Sunday Morning, My Grandmother’s Ravioli or Treehouse Masters. Absolutely no news, no doom and gloom, no medical jargon, no negativity. It helps.

What also helps is just knowing the moment has come when I am no longer the only one awake in the house. Several times I have been able to fall into a deep peaceful sleep the moment my oldest padded downstairs, said hi and then asked to play on the iPad. Or when my youngest has begun to realize that if he wakes up in the middle of the night I am more likely to be downstairs on the couch than I am in bed, and a few times has snuggled up with me and we’ve both been able to fall back asleep.

I don’t think tonight will work out, though. I have to fast for a blood test, one that might give me answers if only I can stick it out through the night without eating anything before eight in the morning. They asked for ten hours without food, when the longest I have managed in months is six. Adrenaline already woke me up at 12:30, and I have only had two hours of interrupted sleep so far this evening. We will see.

Mothers Always Write

~ Kristin DeMarco Wagner ~ Leave a comment

MAW

Hi everyone!

I have an essay published on Mothers Always Write today called “Muffled”.  It is about my younger son and his struggles with speech delays and with not being able to hear well when he was three.  I would absolutely love for you to visit their website at

http://mothersalwayswrite.com/muffled/

They have many wonderful essays and poems through all the years of being a mom.

Thanks!

Kristin

The Pain of Not Being Able to Communicate

~ Kristin DeMarco Wagner ~ Leave a comment

donut

This is the second installment of my column Pain and Joy.  I plan to continue on with it the first Wednesday of each month, so wish me luck!

Christopher, Nicholas and I sat on the couch, their pointy elbows pressed into my ribs, and their pointy chins digging into each of my shoulders as they tried to crowd in to get a better look.

“How come Christopher is always so cute in pictures, and I’m not?” Nicholas wanted to know.

“Kiddo, this album is from 2011, and you would have been four – that cute kid is you.”

Nicholas looks sheepish and pleased with this realization, but also surprised, “I was so little!”

“Hmmm, yeah guys, this is Christopher,” I point at a picture of a toddler with impossibly chubby cheeks sitting in a red plastic wagon, “He would have been one and a half here.”

Christopher, so mature and lanky at six years old, lets out a squeal over how cute he was, while I notice a pattern to our pictures. “Hey, what’s up with you, here? In every other picture you are completely crabby!” Actually, in three out of four pictures he looks either completely unimpressed with life or, as Thomas the Tank Engine might say, quite cross.

Giggling hard he gasps, “Why was I so angry?”

“I know, right?” I goof with him, flipping pages rapidly, “Cranky, cranky, cranky, happy! Cranky, cranky, cranky…”

When Christopher laughs now his cheeks still get round and full. He’s now laughing so hard that he is slightly out of breath and…

“Happy!”

He lets out a long sigh and wipes his eyes.

I didn’t realize how much of his unhappiness from that age would have come through in those pictures. I do know why he was angry, or rather I can guess. Long past when he should have started, Christopher either couldn’t, or perhaps wouldn’t, talk.

Christopher was, and is, wonderfully adept at reading people’s faces, at discerning the tone of their voices and at understanding the nuances of gestures. As a toddler he could express himself non-verbally almost perfectly. His body language transmitted his mood exactly, and he brought his whole body into sadness or frustration or manipulative charm. He knew to direct your eyes to where he wanted you to look by staring you full in the face, and then directing his gaze at what he wanted. His sighs and squeals and yells were unmistakably clear, but that was it. He didn’t babble. He only had one word by the time he was two.

I knew he was angry that he couldn’t get us to understand what he meant or what he wanted, or more importantly, needed. We would begin a ridiculous guessing game. It was a lightening round of 20 questions, where I would survey the situation, scan my memory for what he would be most likely interested in, and ask a yes or no question. I hoped like hell that I asked the right one before his frustration detonated. If he shook his head “no” too many times steam would practically pour out of his head before he began stomping his feet, and I would frantically try to get it right before he would collapse in a sobbing heap on the floor in utter hopelessness. Or his tantrum would be quieter, with him simply stopping in his tracks, refusing to look up and refusing to walk forward another step.

Christopher began speech therapy after he turned two.

The Halloween he turned two and a half, I had been wondering out loud what his costume should be. I had grown accustomed to making these decisions for him, as he rode quietly in the seat of the shopping cart. I picked up a little faux leather jacket and muttered to myself that he could be a rock star. Christopher paused in what he was thinking about to focus his eyes on me and said very, very clearly, “Dog.”

I was stunned. This was the first time, the absolute first time, he was able to calmly express that my ideas for him were not the ideas he had for himself. Just one word, one syllable; the access to that one word gave him power. That one word gave him the ability to feel secure in his message, to feel secure enough in his ability to be understood that he didn’t have to scream. He didn’t have to cry. I didn’t have to guess, and guess wrong. I blubbered, “Of course you can be a dog! Of course you can be a dog.” He smiled, a very quiet serene smile.

Christopher turned three in April, and the volume of the words he could use had exploded. At his meeting with the school district, the evaluator said that he was no longer delayed, but he could continue with the program for pronunciation help and emotional support. His tantrums were no longer something that dominated our days, though he still didn’t have quite enough words to communicate everything that went through his mind, so they did still happen now and then.

In May, I brought the boys over to my parents’ house to visit and tell my mother that they loved her, now that both of them could. I dropped them off at my in-laws to stay the night, as my father and brothers and I would be helping Mom through open heart surgery the next morning.

When Mom’s surgery was successful, and after she had been in the recovery room for the initial few hours, we were allowed to see her, two at a time, in the ICU. I don’t remember who went first. I know Dad was one of the first two, and then maybe one of my brothers Scott or Matt or Anthony. She was not awake the first time I saw her. The second time I came in I know Matt told me, “She seems happy when you hold her hand.”

So I did, and as I held her left hand I thought about what she might be feeling. Her face was flushed and scrunched and looked distressed. I wondered if she felt anxious about the breathing tube still being in place. I wondered if she was feeling pain from the incision, or if she felt worried about her Parkinson’s meds being off, or if there was a part of her that felt scared or lonely. Then she tried to wriggle her fingers out of my hand. At first I held tighter. She seemed to be trying to break free of my grip, and I chastised myself that perhaps I had been patronizing and she didn’t need my hand.

Confused, I then tried to release my hand, and Mom, with limited motion because of all the equipment attached to her, waved it back and spread it open. She traced something on the palm of my hand, and I looked up at her face with surprise, “Are you trying to write something?”

She blinked her light green eyes so deliberately I knew she was nodding yes.

“H…” I would look down at my hand to make sure that the letter I felt was what the letter actually looked like. I had so many years of practice when she would trace the alphabet on my tiny back and I would proudly tell her that I knew what she was writing. As I said each letter I looked up at her face to confirm I had gotten the letter right.

“O…T. Hot?” I looked up at her and with a softening of the tension in her face she indicated yes. Just one word, one syllable and her power came back. I wrenched myself away from the soft fuzzy imaginings of what she might be feeling, and was able to focus on the practical things that needed doing. My ideas about her were not the ideas she had herself. I played twenty questions with mom, “You feel too hot? It’s really uncomfortable?” Then I would ask the nurse, “Can we remove that blanket? Is this normal to feel so hot?”

By then I know Anthony was in the room with me, and I would call out letters to him so he could help me string them together coherently.

“T…A…P…E”

“The tape is bothering you? The nurse says we have to keep that on, its holding the breathing tube in place, I’m sorry.”

“I…P…O…D”

“Oh yeah, the soothing meditation sounds for afterwards. We’ll get that set up right now.”

“C…A… wait I missed that one, you have to slow down a little because I can’t keep up…H…B? Okay Mom, the nurses need to you to relax for a little while to get deep breaths to get your oxygen levels up.”

When Mom breathed deeply enough, she would fall asleep and her oxygen levels would drop, which meant waking her up again. I explained the situation to her and she wrote in my hand one more time before I was shooed away. I was so tired I couldn’t catch it. “Tell me later, Mom. You can tell me later.”

Later on she told me with a smile, “I’m surprised you didn’t get that one. I was writing ‘Catch 22’ joking about what the nurses wanted me to do with the breathing.” I smiled back at her and apologized for missing it.

The same way I had apologized so often to Christopher, “I’m so sorry I didn’t understand you.”

Night Light

~ Kristin DeMarco Wagner ~ Leave a comment

My audio recording of Night Light

Dusk

Darkness, the way night makes the edges of things indistinct and brownish-grey, is something I experience most often within the walls of my own home. Children who need to go to sleep by 8:30 and a husband who travels nearly every week mean that night is something that descends gently outside our windows. It does not fall on us while we are sitting on a terrace, enjoying the end of a restaurant meal. It does not surround us as we walk down city streets, or hike through woods. Even in the winter, when the sun dips below the hedge-line of our backyard before dinner, cold keeps us in and cozy. Night does not often fall on us somewhere other than our house.

Which is what makes memories of bonfires on freshwater lake beaches stand out as unique, both as a child and as an adult.

I remember being only six or seven when I was encouraged to try roasting my first marshmallow over a bonfire. The small circle of light cast over the grassy sand only reached the feet of the adults who were watching us. They sat back in lawn chairs, their faces obscured by shadows unless they leaned forward to peer at us more closely. I kept darting carefully between the fire and the adults in that circle of sand, amazed that I was holding a stick over fire without grown-up hands holding on as well. My legs were still bare in shorts, but a sweatshirt helped keep the chill off when I would venture further away from the glowing heat.   I asked again and again if the marshmallow was cooked enough because I wanted to do a good job of it, until one patient grown-up who became tired of leaning forward so often to see a still bright-white confection explained that when it was “golden brown” it would be done. I remember nodding my head not really sure what color that was. As I left it in a little longer, and a little closer to actual flames, I got to see it for myself and understood.

With the adults’ faces hidden and their voices hushed I got the first sense that, while they were there if something happened, I was alone to think and discover and learn without them. The glow of this small space in such a large darkness was enough. Even with an entire universe unknown, there was safety being alone in it as long as some light remained.

A few years ago we went to a family reunion on Kentucky Lake, and one of the nights we had a bonfire on the beach.

My older son was only six at the time, and afraid of many things. I saw him come close to the fire, then retreat with his father just feet away from the light. They were swallowed by darkness quickly, and I could hear their voices trip down to the water’s edge and come back. In that short trip, with my son only reassured by my husband’s hand holding his, he accomplished something big I didn’t know he could. He walked through unknown places without fear; he even felt a frog jump onto his foot and didn’t panic. In fact, he was excited to report what adventure had happened in his short absence from my sight.

I stayed in the sand with the littler ones, including my younger son who was four. We stayed a little ways off from the fire, but made our own circle of light with glowsticks. Preschoolers, with parents just out of the cast of pinks and greens and oranges and blues, sat with me and buried their glowsticks in the sand. They retrieved them and would bury them again, checking how far beneath the surface they could plant their treasures before they were completely obscured. They threw them and chased after them, holding so loosely onto the only light they had. Even in the daylight I couldn’t necessarily figure out who belonged to whom, which children went with which adults. I made sure to lean forward so they could see my face and I could see theirs and then tried to let myself feel safe that other adults were circled around us in the darkness. That they were still watching us even if we couldn’t see them as clearly. No one would really be lost in the darkness for long, even if they danced on the edges of it. Though it looked like I was the only one keeping an eye on the children in the circle of light, I wasn’t.

I knew as a child, and as an adult, that a safe presence can still be there even if it is unseen.