I remember the first time I ever passed through the Appalachians. I was eleven. I was born in the shadows of the towering Rockies, living nestled in the suburbs of Denver. My dad had joined the Navy when I was eight, and we had led vagabond lives since- first one house, then another, as he completed his training. The training completed, he headed out on his first assignment. We, in turn, returned to Colorado for a time, to visit with family, to tie up many loose ends, and begin our new Navy life in earnest. We drove across the country to head to the new place on the East Coast. The endless, monotonous flatlands of Kansas lulled my siblings and I into sleep as my mother drove. Missouri and Arkansas didn’t make much of an impression on me, except for when we crossed the mighty Mississippi River as we crossed into Tennessee. We’d manage about a state a day, finally pulling in to collapse into sleep in some hole in the wall motel off an exit. Tennessee itself took a very long day and I remember drowsing through most of the afternoon with heat and boredom.
She shook me awake not too long after we passed through mid-state. Look, Joy. Look at the mountains in the distance. I distinctly remember being pretty annoyed at being woken for what, in my eleven year old mind, looked distinctly like foothills. I told my mother so, in annoyed, sleepy voice, and she laughed. I was under-awed by those ancient and bowed mountains, covered with green. They had no granite peaks, no snow caps, no startling thousand foot drops, no aspens. They weren’t mountains. They weren’t home.
I wouldn’t remember much about the Appalachians for many years, except for the occasional times we passed back through them on our way out West over the years on vacation. I preferred the more northern route through West Virginia and Kentucky, Ohio, when we did go, because the mountains were higher there. It wasn’t and couldn’t be my beloved Rockies, but at least the views were better.
My teenage years were very restless ones. I had lived on the East Coast for nearly ten years, but I was still an outsider. The rest of my family adapted well to the new challenges, or at least, they seemed to. I felt rootless. I would pay very little attention on those long car trips, always aching to cross the Colorado line, always straining my eyes to watch how the land would begin to fold slowly, and then more suddenly and shockingly, as we made the trek into Denver and back out again, headed for my Grandparents. Those mountains were my home.
Until they weren’t anymore.
It happened all of the sudden, the last family trip we took together before I would head off to college.
There was a ridge on the outskirts that I loved topping that last night of travelling. We always seemed to get into Colorado late in the afternoons and would be hitting the outskirts at twilight. It was always a beautiful sight to me, the twinkling lights of the city, the gray green foothills behind, the sun setting behind those dark sentinels of granite. It was how I knew I was almost there. Until the last time. The last time, we made that curve, topped that hill, and the scene laid out below was alien. Denver had quite literally moved up the foothills, obliterating them- there was no divide between urban and wild anymore. Everywhere there was dust, as years and years of drought had taken toll. The aspens were scraggly, and the Rockies had this horrible scarred appearance to them, shorn and naked as they were of vegetation that particular year. I kept telling myself I was too old to cry, they were just stupid mountains, but oh I wanted to, so badly. It was such a shock. It had also been many years since I had been there, and I realized in a rush that Colorado would likely never be my home again, and it hadn’t been for quite a few years. I just hadn’t realized it until that moment.
The years that followed that Colorado trip were some of the scariest, most tumultuous years of my life, as it is for all teenagers that are turning adults faster than they can keep up with it. I would make some disastrous and not-so-disastrous decisions in those years, all fueled by the fact that I felt I had no ties, no roots. I can see that all now. It’s always easier to see the reasons, looking back.
I would eventually find myself tucked into another fold of mountains- the Appalachians- when I began college. I resented them for it, for their rounded, smoky, blue-ness. I’d occasionally beg my friend turned boyfriend turned fiance to drive me up to Sam’s Gap in North Carolina so that I could gaze out over miles and miles of quiet peaks and imagine that they were just a bit rockier, a bit grayer.
When the whole world would crash down around our shoulders, my husband and I would make a long looping trip up into the Highlands that straddle three states, all hills and valleys and winding mountain roads. We’d drive and talk and breathe and stop and just stare at the majesty laid out below us. Before I even realized it, those mountains became more home to me than any home I had known previously. Now, my roots lie deep in those ancient hills. My children were born under their stars. There is a piece of wilderness there that has been woven into my blood- I’ve made love in those hills, I’ve buried a child there. The dirt and the cosmos of the place echo in my veins. I may not be there right now, living at a river delta on the East Coast, but my soul walks those hills every night as I sleep. My ancient hills. My home.
Every four or five months or so, the pull gets too strong, and we load up and make the days trip, spend a week. Sure, we could go on a ‘proper’ vacation, but we’d rather go home. Rather be with those we love. Fill up the tank, so to speak. It’s usually a crazy jumble of things and not very vacation-y at all- helping friends move, helping aging parents fix house things they can’t anymore, those sort of things- but we don’t mind. We belong here and they belong to us and it’s home. Do we wish we could plan it better sometimes? Sure. But the harrum-scarrum of it is half the fun. We come home oddly refreshed, when you consider what we’re up to when we’re up there, and we can carry on for a while longer. Until we can’t anymore, and those mountains call us back with their beautiful, ancient, come-home song. Beautiful mountains that they are, bowed by age. I hope I learn their song well.
All fear is a paper tiger, my dear friends. All of it. If something you fear is drawing near you, some suffering, pain, or torment- if it’s coming to you like a ghost across the water- know it is our perfect, All-Knowing and All- Loving Lord that can lead us to a higher path.
We’ve had a stretch of weeks that have been difficult, to say the least. They just are what they are. The circumstances underlying why they’ve been hard won’t change any time soon. We all face seasons like this, some of us longer than others, some deeper than others. All you can do, essentially, is to continue to live. To put one foot in front of the other, to take one breath after another, to string one prayer after another. Fear tends to stop us in our tracks. I think I’ve gotten stuck more times than not in the last two years, holding my breath.
My dear friend, mentor, and chrismating priest, Father Stephen Mathewes, gave a homily on fear this past Sunday. Tuning in with my children on Monday morning as we began our school day on a very rough morning, we all sat quietly and listened to the broadcast as part of our morning’s school work in religious studies. We tend to draw or color quietly (all of us, even me!) as we listen to his homilies. As Fr. Steve joked with the congregation at the opening, we all laughed along, noting with glee the laughter of a dear friend in the background, as this church family was our own for nearly two years before we moved. Father Steve began into his homily and the children kept scribbling furiously at their drawings. I, however, found my hand dropping from my sketch as I leaned in to catch every word. Eventually my pencil rolled on the floor.
I’ve been having a lot of arguments with myself about fear over the last month or so, and I was rather shocked to hear that Fr. Steve had apparently been listening in on my inner dialogue. His answers were pretty bang on the money, my friends. Funny how that works. (It’s a good quick listen if you have ten minutes or so!)
Given what I’ve gone through in the last two years, I realize that so often fear has overtaken me quicker than I can recognize it coming, and it’s not till I’m in over my head that I sort of gasp for air and let go of the breath I’ve been holding. I wondered about this as I listened to Father speak. What sort of radar might I have, what sort of an early warning system could I put in place? A “you need to pray NOW” blazing sign, if one could be had? It puzzled me.
Picking up my pencil off the floor as Father finished his remarks, the answer was quite literally staring me in the face. Little delicate flowers stared up at me from the page.
There’s reams and reams of commentary in the world about creating and fear- about how fear and perfectionism block us from getting to the page. I absolutely agree with them. But also ask any creator, and they’ll tell you that they create because they can’t not create. It’s like ants in their pants.
I know the feeling well.
I also know how destitute my life has been of creating in the last two years.
It’s no mistake that within the last month and a half I’ve sketched, painted, collaged, and scrapbooked more pages than nearly the last five years combined. While our life is still quite difficult, the children’s health has finally stabilized, giving us all more time to think, to sleep, to dream, to just be. Fear has a much harder foothold to find now.
It’s my giant neon sign: if I’m not creating for days, weeks on end, I’m holding my breath. If I’m holding my breath, I am not abiding in Christ, and fear has stopped me in my tracks. Creating helps me push back the darkness and take a deep breath. I won’t ever starve myself of it again, if I can help it.
Dear friend, you may not be wired as I am, but I’d bet you’ve got a early warning system you might not have considered yet. Maybe you love to read but there just hasn’t been time. Maybe your brain fog clears when you’ve taken a long hike, but it’s been months since you’ve strapped on your boots. I’m not sure what it might be, but I think you’ll be able to identify it by how starved you feel when you don’t have it. If it’s missing, if you’re starving, your PRAY NOW sign is blinking a bright, startling red. It’s your sign to remember Who is holding you, to take a deep breath, and to shred that paper tiger that’s got you all wrapped up. Ask me how I know.
“I’ve come to believe that in the very midst of the burning dumpster fire of the Not-Yet the practice of cultivating joy and happiness, noticing the good and the beautiful and the true and the pure isn’t an act of betrayal of our solidarity but instead a very real act of prophesy and invitation to the Soon-Coming-And-Right-Now-Already of the Kingdom of God. We are sowing seeds of faithfulness to the way it will be, for the vision of the world we want to see come to pass, world without end.”[…]”In a way, it reminds me of stories my Granny used to tell me of the war years, how they made every effort to keep things as normal as possible to keep not only their own spirits up but because they believed it would demoralize the enemy, how even the regular ordinary beautiful things became not less important because of their suffering but even more important.” – Sarah Bessey
I’ve thought a lot about fear lately. It’s hard not to miss its effects in an election year, in a hot, oppressive summer that bakes the ground to barrenness. There’s a lot of epithets that get slung ’round by this person and that person, our tilt a whirl media frothing at the mouth. Fear’s ugly fangs seem quite obvious in that context. Less apparent though, is how fear slithers about our ankles, tripping us up at the first sign of trouble in our daily walking out of our lives, our purpose. How it crushes you until you can barely breathe. It’s insidiously quiet and categorically destructive.
I’m looking over the wreckage and it’s sobering.
I wish our American health system had better words for things, better bedside manner. Learned how to talk to the humans sitting behind the diagnosis. Learned to talk about the hope instead of the fear, learned to talk holistically instead of systematically.
We’ve had no fewer than twenty seven major medical events in the last few years (and more than a smattering of major life events separate from that, financial reversals, etc):
Feb 2008- James- Bladder cancer scare
Aug 2008- Joy- miscarriage, loss of a child, surgery
Nov 2008- James hospitalized- pneumonia- four days
July 2009- James hospitalized- pneumonia- one week
Jan 2010- Lorelei hosptialized- staph infection (eye)- one week
Nov 2010- Joy hospitalized- pneumonia- two and a half weeks
Feb 2014- Ellianna hospitalized- mononucleosis- one week
June 2014- Ellianna diagnosed with Iron Deficiency Anemia- biopsy-cancer scare
Aug 2014- Ellianna diagnosed with Celiacs
Sept 2014- Josiah hospitalized- GI Issues- one week- biopsy- cancer scare
Jan 2015- Josiah hospitalized- GI Issues- five days
Jan 2015- Ellianna begins iron platelet/plasma infusions/transfusions
Mar 2015- Josiah hospitalized- GI Issues- one week
Mar 2015- Ellianna finishes iron transfusions
Apr 2015- Josiah hospitalized- GI Issues- four days
Apr 2015- James- knee injury
May 2015- Joy- cancer scare– masses found and removed
Oct 2015- Joy- ER- Kidney malfunction
June 2015- Josiah- cecostemy tube surgery- four days
Nov 2015- James- back injury
Jan 2016- Josiah- ER Visit- Cecostemy tube complications- 30 hours
Feb 2016- Josiah- more nerve damage discovered (GI)
Mar 2016- Josiah- Sedated MRI
Apr 2016- Josiah- exploratory surgery- outpatient
June 2016- Ellianna- Periodic fever syndrome diagnosed (UVA Trip)
June 2016- Lorelei- anaphylactic reaction- ER
July 2016- Josiah- arm through a plate glass window- Two ERs, Two ambulance rides.
An average of three or more major medical events each YEAR.
Of all those, maybe five or six of them happened in such a way that we knew what was happening and felt comfortable with both the treatment and what the doctors were telling us; that is, while the news may have been bad, the doctors laid it out clearly in a comprehensive way that did not solicit fear or many unanswered questions.
I highlighted cancer scare for a reason. We have had friends and family near and dear to us be diagnosed with cancer. We’ve watched as friends have died of cancer. We’ve watched our extended family go through a very long journey with a child with cancer. Cancer is scary for a reason- if it isn’t fatal, it is a long, protracted suffering that might lead to healing or might not. When that word gets pulled out of the ether in a medical office, the connotation is clearly and dreadfully highlighted. When the word biopsy is mentioned, it, too, has a frightening connotation. And friends, our medical establishment brings the word up far too often, far too quickly, often out of context. I don’t say that lightly.
Having been subjected to a cancer scare four times now, it’s the worst four to six weeks of your life. You walk into an office and think that sure, you’re sick, but everything is okay and the doctor will figure out what to do, and then five seconds into the discussion, “We think it might be cancer” blindsides you. It’s bad enough when it is yourself. It’s another thing entirely when it’s your child. I can’t express to you the terror that rolls down your spine and makes you break out in a cold sweat. Our American medical system needs to have a better approach to health care, period, and we especially need to talk about how to talk about illness in a holistic way. Period.
When I look over that list, so many things war for my attention. I see the wreckage fear has played. I see just as clearly every single place God was faithful to us, where God provided for us when we thought we couldn’t handle one. more. thing. They present to me in a synergistic way. I couldn’t separate the two opposing viewpoints if I tried. I see why both my husband and I struggle with anxiety, a PTSD of sorts when it comes to medical things and mail boxes (where those awful, dreadful bills come from). It wasn’t all in my head; it really happened. It defines so much of who we are now, so much of who we’ve become, our relationships with each other, and our friendships.
I see how fear has been driving me to run.
I’m tired of running.
I needed closure. I needed to turn to the next chapter. Our current reality probably won’t change much any time soon, but I needed to take a step back and re-focus my attentions. I spent time going through all of my social media (including this blog) and archived vast swaths of our story from the last few years. I read back through one hundred and forty blog entries in which I basically said the same thing over and over. I’m scared.
It is a very raw, very precious story that needs to belong to just us now. Sharing our story at the time was the absolutely right thing to do, and it is just as absolutely right now that it returns into privacy. I don’t know what I’ll do with it, if anything, in the months and years ahead. Maybe it just gets kept for our children when they get older. Maybe I write a proper book, like people have been encouraging me to do for years. I don’t know. But I need the closure here. I need this to be my safe space once again, where I can be myself, not completely subsumed and defined by this medical tiltawhirl. We are working on a path forward, and I can’t focus on the things I need to do if I’m constantly looking backwards. It’s over. It’s done. We have two chronically ill kids. The financial wreckage of the last three years will take years to put to rights. This changed our life. But it is not who we are. It is not who I am. I will not be defined by fear.
I’m not scared anymore. I’m done.
I’m using normal as a defense against the Enemy. He has no power here, and I will combat him with all the things that bring life to me and death to him: the sound of my child’s laughter, the way a paint brush moving across a page fills the whole sky with hope. The beautiful, the true, the pure.
I’m moving on.
I’m sorry for slipping out right in the middle of a series. Josiah had some complications with his cecostomy tube that necessitated a late night emergency department visit Tuesday night and subsequent admission on Wednesday morning. Amazingly and gratefully the surgeons were able to get to him early in the day on Wednesday and fix things and we got to come home. It was certainly unexpected. I ended up being awake for over thirty hours due to our normal day on Tuesday plus the ER for 13 hours and so on. By the time I thought I’d get to curl up and rest at the hospital, they were releasing him. Needless to say, I don’t recommend it. It definitely sent our week spinning about!
I plan to draw the winner of the Restful Teaching series tomorrow, February 2nd. Every comment on any of the Wonder and Inquiry posts is an entry- I will also grant entries for shares on social media (please tag me so I can see it). You have until tomorrow to enter!
The series itself will not come to an end, but I will draw the winner. To be honest, I feel as if I’ve moved a bit fast and crammed a lot of information into a few posts which probably feels overwhelming. Coincidentally, I felt the same way leaving the workshop. It was a good way to make one’s brain hurt, so much to think about and consider and contemplate- but it is a tremendous lot to take in. It has taken me three months to even begin to “narrate” what I’ve learned! So, I’m going to apply the brakes a bit and have a post a week dedicated to the Wonder and Inquiry series and return to a more eclectic mix of posts so that there is time to digest and talk together. Above all, I’d love for it to be a conversation- what we’re all learning on this journey: what pitfalls we’re struggling with, what we’ve found to go well, our favorite resources. I’m not just standing on some box here, jabbering. (At least, I hope! 😉 )
I was thinking about this path we’ve chosen during the crazy pre-dawn hours in the ER. (It was so slammed. That pneumonia/cold virus hit very hard in our area and it was certainly reflected at the ER. So many little ones, struggling to breathe! The nurses and doctors were run near ragged.) We were pretty sure that Josiah was going to be admitted, so he stayed awake at first, even though it was creeping past his bedtime. I usually bring a small collection of things to entertain him, but he was interested in none of it- he wanted to do math homework, of all things.
Math!? I wondered at this at first, but the more I thought about it, the more it made sense. He is at an age that he understands exactly what is going on when we get to the ER, that there will be pain, and eventually (a loonnnng eventually, in most cases) they will fix the discomfort and pain and we’ll get out. But there is never really an answer one way or the other as to the timing of things. The only identifiable characteristic of these hospitalizations for him is their very uncertainty. And he’s also at an age that he is falling madly in love with math- with numbers- with the very language of it, the certitude that this and this is always that and if you do this the number always does that. When I saw it that way, his late night craving for math made sense- his way of controlling the uncontrollable. It made me think of the Apollo 13 movie and Jim Lovell’s wife saying to him that when he was on the far side of the moon [on a previous mission] she vacuumed the living room floor over and over until they made radio contact. The ways we find to cope.
Later on in the wee smas, they wanted a contrast dye x-ray of his port and tube. He had been asleep for awhile, angry and groggy. I hated waking him up. He began “coming to” as we were passing from the ER into the Radiology ward, which is decorated in an undersea theme. There are fish, dolphins, manta rays, coral, and a bunch of other things painted on every surface. The windows are even shaped like port holes. He looked about and asked me if I thought that Professor William Waterman Sherman would have seen creatures like this on his trip [across the Pacific before he crashed on Krakatoa.] The tech of course is giving us quite a funny look, a bit lost. I answer Josiah that I thought maybe he might have seen the bigger ones looking down from the balloon, but he wouldn’t have been able to see the smaller ones. At this, the tech is looking at us both with a positively quizzical look on her face.
I sheepishly explain to her that it’s from a book we’re reading together, called The Twenty One Balloons. “It’s a made up story about a guy….”- Josiah cuts in and starts telling her the story. He continues telling the story as more techs and a doctor file in, sucking them all into the story as they work. It completely distracted him from the not-so-fun stuff, and when he got a bit queasy from the dye process, he compared himself to the Professor, who at one point makes the mistake of breathing in yucky gases from the volcano while riding a balloon airy-go-round. [You’d have to read the book!] He had the whole room asking him what happened next, at which he gave his classic joyful grin and said, “I don’t know, mommy hasn’t read it to me yet!”
More than one tech remarked on his recall of the story, and one even said, “Now I have to go find that book! I want to find out what happened next!” They all asked me how he could remember such an involved story. I just shrugged my shoulders, because it’s not like I make a regular practice of having them narrate. We use narration within an Institute for Excellence in Writing framework, but I do not require them to narrate everything they read to me. I was impressed myself! He was remembering details I had already forgotten.
Later, after he had been released and we were headed home, I got stuck in traffic due to some boffin DOT workers. He said (with perfect comedic timing, I might add) “what fools these mortals be!” in his best dramatic voice. The line is from Act 3, Scene 2 of A Midsummer Night’s Dream, one of Shakespeare’s comedies. We’ve been learning small sections using How to Teach Your Children Shakespeare, and this particular line has sort of become a running joke in our family, each kid putting his own spin on how Puck might of said it. I’m including Ellianna’s below because it is just too cute! But it was just so funny! His sense of humor lightened the frustrating situation. I was on hour thirty one of no sleep at that point and it made me laugh so hard I cried.
For such a difficult time and a particularly long, wearying week, all these moments that happened with Josiah were such shots of encouragement to me. I’m so grateful we have this family well of stories and culture to share in the hard moments. This path of wonder leads to moments of joy. I can keep on keeping on when things get difficult if there are moments like this to be had, even in the most unlikeliest of places and hours! Second star to the right and straight on till Morning!
This is the seventh entry in the Wonder and Inquiry Series.
“Besides, the world isn’t split into good people and Death Eaters. We’ve all got both light and dark inside us. What matters is the part we choose to act on. That’s who we really are.”- Sirius Black, Harry Potter and the Order of the Phoenix
The last few weeks have been full up to the brim. The kids are working hard; I do my best to keep up with all the amazing places their minds take them, but I am a mere mortal.
So very often, my gaze is focused right in front of me- on the kids, on the medical stuff, the house, the cello and ballet lessons- but you’d practically have to be living under a rock to not have your gaze pulled across the Atlantic right now. It’s true of every tragedy- your life goes on, the kids still have to be fed, the world continues to turn- and that doesn’t seem possible, given the sorrow- but turn it does.
My older kids are of an age that they begin to understand the nuances of the wider world around them. We listen to the news via the radio on our errands (NPR and BBC World News are probably the safest for little ears- they are usually quite careful to provide warnings if there will be language or content that is un-suitable or too violent for younger ones.) Now that we are deep into pre-World War 1 History, it is not difficult for them to make connections to the world before them- some of the deep divides we see in the world today had their beginning at the turn of the last century. As a historian, I find it absolutely fascinating just what connections they make, unencumbered of the baggage we adults carry with us. An example: the most often said phrase during discussions? Well, so and so wasn’t being very kind to his/her subjects/neighbors/friends/parents. In the vast sweep of history, they see families. Families who forgot to be kind, who forgot to love, who forgot who they belonged to, who forgot to respect the humanity of another. It reminds me of this discussion we saw between a son and his dad in Paris.
C.S. Lewis said to his god-daughter that
“I wrote this story for you, but when I began it I had not realized that girls grow quicker than books. As a result you are already too old for fairy tales, and by the time it is printed and bound you will be older still. But some day you will be old enough to start reading fairy tales again. You can then take it down from some upper shelf, dust it, and tell me what you think of it. I shall probably be too deaf to hear, and too old to understand a word you say, but I shall still be your affectionate Godfather, C. S. Lewis.”
I thought of C.S. Lewis’ admonition about fairytales as my children were watching Harry Potter and the Goblet of Fire. The quote above is actually from the next film in the series, The Order of the Phoenix, but it’s the quote that came to mind as I watched my kids watching Dumbledore, watching the wizarding world suddenly go from light and laughter and joy to tremendous loss and darkness and uncertainty. All of the wizarding kids are faced with choices- very hard choices, and those choices will play out over the next few books. We as the audience have the luxury of knowing how the story ends, but the characters do not- and, as my children first watch, they, too, are left in the dark.
Doesn’t that sound familiar?
I keep thinking of something Andrew Kern said at a recent workshop I attended. He said that in the Odyssey, the muses are known by what they say- remember. The sirens always call you away from your purpose, but the muses will always remind you of first truths, as if to say- remember who you are. Remember where you are going. Remember how to get there. In Harry Potter, Harry’s closest friends will be his Muses throughout his extremely difficult journey. And it is his godfather, Sirius Black, who will say the above line to Harry when Harry becomes terrified that Voldemort is taking over his soul.
So this is what I say to my kids, gently, right out of the wizarding, fairy-tale world- we can remember who we are, and not be scared. We can remember the families- in Syria, throughout the Middle East, all over the world- in Paris, in New York- and right across the street. In remembering Whose we are and to Whom all those families belong to, we can remember and be at peace. We are heading Home. The way is so very dark, so very scary, but we can always, always look towards the Light, and walk each other Home.