• Ebenezer,  facing grief

    So do all who live in such times…

    (A recent doodle of mine, completely unfinished and rough around the edges. Seemed fitting.)

    I, like many others, I imagine, am emerging from some strange cocoon rendered by the pandemic years. It’s been ages and ages since I’ve written; nearly a year, in fact. In the intervening time I have passed that most ancient of hills and crested, turned forty. And yet in some ways I still feel fourteen.

    I feel like I am repeating myself to state, unequivocally, that the past few months have been some of the most difficult months I have endured. How many times I have written some variation of that since the children took sick nearly a decade ago is probably near uncountable at this point, but that does not change the truth of the statement. It has been very hard, harder still, dark in ways that just couldn’t even seem possible and yet were, deeper and darker than any road I’ve walked previously. I could never have imagined where my feet have carried me as of late; to be brutally honest, it doesn’t feel like my feet have been walking. It has felt nigh on crawling, clawing, finger tip by finger tip, dragging forward on the roughest of ground.

    It has left me wounded, bleeding, and quite heart-sore.

    Lest it be misinterpreted, it is not at the hands of others that these wounds have come.

    It has been simply, the many and myriad situations we have found ourselves in, quite against our wills, beyond our control. One of my children suddenly developed a rather rare seizure disorder in the fall that they have yet to discover the root cause of. Not soon after, my dearest beloved was diagnosed, after a long battle post-Covid-Sars-Cov2-Delta infection last March, with a rare and degenerative autoimmune disease, requiring extensive and expensive IV transfusions. My husband’s father spent over a month and a half in the hospital during the winter months, landing in the ICU multiple times, and has finally come home only recently. Both he and my husband’s mother caught Covid during that hospital stay, which frankly triggered quite a bit of PTSD for both my husband and I, though thankfully, their infections were much milder than my husband experienced. There were so many other challenges, some more normal that all families tend to face, and some more rare, unique to our situation, but by God, it has been hard. And exhausting. And so very difficult.

    My younger children and I have been listening to The Lord of the Rings: The Fellowship of the Rings lately, read by Andy Serkis. We happened on this quest quite without planning- some random conversation in the car or at the dinner table raised the awareness that my younger children had not ever heard the story of Bilbo and Frodo (though my oldest two children had)- and we set about to amend that immediately. I think, like so many things I have observed over the last decade or so- the Holy Spirit guides our hands and hearts, even when we are not aware. It was time for us to listen and to learn, and while it may have seemed a random choice, I cannot help but see that Someone much wiser had ordained for it to be so.

    There’s a quote, oft repeated, that comes out of the Fellowship.

    “I wish it need not have happened in my time,” said Frodo. “So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.

    – J.R.R. Tolkien, The Fellowship of the Ring

    Context is key here.

    Frodo has just come to the keen and horrific realization that he is putting every one he loves in danger by staying in the Shire. He’s paralyzed by the enormity of what he must do, and Gandalf has no clear answers as to how the journey will end- only that it will be deadly perilous. Frodo is already under the influence of the Ring, but doesn’t realize it yet. As the Ring desires self-preservation, it is doing all in its power to convince Frodo to delay.

    Frodo, bless his stout hobbit heart, is overwhelmed and delaying and procrastinating when he says this to Gandalf. It’s somewhat understandable that he is balking at this heavy burden. The fact remains that he is the only that can bear it; it is too dangerous for anyone else.

    Starting to sound familiar? Don’t know about you, but that sounds like the journey of suffering to me. Gandalf, in his compassion, tells Frodo that he does understand- but in the end, we only have to focus on what is given to us. We cannot fix the whole world, nor can we even fix or protect our own Hobbiton or the Shire working on our own power, but we can take the first step, and then another, on the path set out for us. In so doing, in that sacrifice, we join in the redemption of the world.

    It is a timely reminder when the very foundations of the earth seem to be trembling and we are at a loss as to what to do or where to begin.

    Find some trusted friends. Sing some songs as you walk, especially in the dark. One step and then another.

    It’s been a sermon I’ve been preaching to my heart often of late.

    I was sweeping off our newly built kitchen deck, thanks to the generosity of my father. A project long delayed, finally completed. The sun was warm on my shoulders, and I was suddenly struck by the simple ordinariness of sweeping the deck off. It was the most normal and most quotidian of things to be doing in that moment- a simple chore that you or I have probably completed many times without thought, but this time felt amplified, each moment standing out like a string of golden glass.

    I haven’t had a lot of normal for a very long time.

    Many times, even, I have had to look on forlornly at un-swept porches full of leaves, gardens gone to seed, weeds growing everywhere, dust and grime caking the bottom of showers and in the corners, cars so full of fast food wrappers and cast off jackets and mysterious goo, laundry grown truly mountainous, an empty refrigerator and pantry, having to choose again something fast or at least on the way home for my husband to stop at the grocery store, literally drowning under the weight of our family’s needs and the requirements of its care. The normal quotidian rhythms of simple home care have been elusive more often than not, buried under the medical needs of our family. We won’t even delve into the regular maintenance required to keep up a house one owns- the lawns mowed, batteries in fire alarms, that odd leak repaired…let alone major renovations, even when they are desperately needed. (Looking at you rotting, decrepit deck that had to be torn off the house for safety reasons, and then left at fiddlesticks for almost four years because it was so far down the priority list, even though we couldn’t walk out of half of our house and it wasn’t technically safe, especially in case of fire).

    You don’t realize how the simple and the quotidian ground you until you don’t get to enter into them very often. Sweeping the deck, simple as it was, gave me such a moment to breathe, and appreciate the fact that I was actually in a place to do such a task- such an elusive, elusive thing. Weight rolled off my shoulders that I didn’t even realize had settled there.

    It has amazed me lately how often I have taken the simple for granted.

    I won’t lie though: even as that golden moment sweeping the deck happened, a dark storm cloud seeped into my mind. How long will it be until this is beyond me again? Will this ever stop? Will we ever find our way? I am so very tired. I feel very bewildered, Lord. My heart is so heavy. Please help.

    In that same moment, I could hear Samwise Gamgee whispering in Frodo’s ear, and it brought back strength and hope to my mind. My back straightened and I could feel the sun again. Such is the power of a story and a simple task. I am so weighed down by what I face, but I can feel Gandalf’s gentle compassion, speaking to me too, procrastinating and heart sore as I may be: choose this time. Choose that first step out of the gate. Sing a song in the dark if I can.

    Some recent articles that have ministered to me:

    Why We’re Required to Find Beauty by Tsh Oxenreider

    The Fruit of Obedience (on Hobbit-like faith) by To the Shire

    The Mystery of Being Human in a Dehumanizing World by Joshua Heavin

  • Ebenezer,  facing grief

    Love changes everything.

    Today marks eleven years since we lost our little one. The grief has changed and mutated over time. Now it is a mostly fleeting feeling that someone is missing at the table, an echo of laughter, a sense of something just there, beyond your reach. Love changes everything. I have never been the same.

  • Ebenezer

    Learning to fly

    My grandmother died in March.

    Like so many other things that have happened to me in the last three and a half years, it is only now, months later, that the weight of loss is becoming felt, that I can even begin to process it.

    The week she fell sick was a very intense one for my own family of little ducklings. Some had been ill. Some were hurting. Tears had been shed. Lies had been revealed. One child of mine was spinning so far off center that the fear was that they would topple completely. Tearful conversations with our priest and counselors. Endless nights of broken sleep and whispered prayers. 

    A text message landed like a fiery arrow in the midst of trials.

    She’s really sick. She isn’t responding. Your father is headed there.

    My grandmother is the universal constant in the physics of my life. No matter how the storms raged or the waves crashed or every damn dish slid to the floor in the aftermath, no matter how many mistakes I made, no matter how many times I failed, one thing was certain. Grandma loves me.

    We were compadres, we two. She was the feistiest, funniest, most beautiful woman I knew. Few things were certain in my young life, but I knew when I grew up that I wanted to be like her.  We had so many inside jokes. She knew things out of the depths of my heart that I have never told anyone but her. Months, even years, could slip by as we both grew older, but as soon as we spoke again or saw each other, we picked right up where we left off. I never quite felt lonely, even if I hadn’t spoken to her in months. I knew she was with me. 

    I know she is with me even now. 

    My husband understood all this, the strong threads that pulled us together, Grandma and I, and before I could even really think about it, I was on a plane. 

    I was on a plane with no idea what I would face on the other end, if she would still be living…or how I would arrive at the hospital. Or where I would sleep. 

    Others would find this strange, this wild jump into westward skies.

    For me, it’s a normal fact of life. Sickness falls so quickly, you can’t plan for it. You can’t make it fit. Sickness doesn’t care. You can fly halfway across the continent with less than $20 in your pocket and sickness will endlessly march on. 

    But under that endless marching blast of reality, there is a whisper, sweet: His eye is on the sparrow.

    Lean into it and fly.

    One three hour flight and two metro trains later, I walked up a parking lot and into a hospital. It, like all its sisters, was sterile and cold. And very familiar. 

    I slipped into an ICU room and was greeted by a surprised family that couldn’t imagine that I’d come so quickly. 

    I immediately felt a grief for them, those family members. Not her, not my dear lovely bird getting ready to take wing, but for them. 

    They did not know the shapes and contours of this place, the dark angles, the companions that sat in the room with you whether you wanted them to or not: fear, anger, dehumanization at the hands of a medical machine that can’t really understand that that which you hold most dear, your autonomy, your sense of self, and your very body is slipping beyond your control. Very rarely are compassion and mercy found in these halls. Some patients heal, some go to God. This is the way of things. You learn this when you spend endless hours in endless rooms with no answers and prayer the only thing to buoy you. 

    They did not know this. They were learning in it in the fire. I wanted to quench it for them and I could not. 

    You have to stay in the moment in a hospital room. To think forward or backwards will break your spirit in ways I find hard to define, but I know the brokeness. You can’t play what if. You just have to exist. You have to eat and sleep and care for yourself, somehow, as the world caves in around you and all time loses meaning. But you have to stay in the moment. 

    I dwelt in that space. I sang to her. I rubbed the backs of my father and grandfather and aunt. I ran my hands along my grandmother’s arms, held her hand, pulled the hair back from her face, kissed her cheek. I held space for peace. I, in my own feeble and broken way, began to understand what a myrrh-bearing woman was, how to be a midwife of loss. I got them to laugh, her closest loves, and I held them as they cried. 

    When I knew it was growing close, her Home going, I knelt over her and whispered a prayer of my Orthodox faith, said every Vespers service, a sort of hope and request to God:

    Lord, now lettest thou thy servant, the handmaiden of God, Marylin, depart in peace, according to Your Word. For her eyes have seen Your salvation, a Light to lighten the Gentiles, the Glory of Your people, Israel.

    I kissed her and left the room, as all the family did in that moment, at a family member’s request. It would be the last time I spoke with her. 

    She passed about an hour later, while we were all in the room, just returned from a breakfast we all sort of desperately needed but none of us wanted to go get or even eat. It’s one of those strange realities of hospital life, that need to keep leaving and eating and going and hoping and sleeping when the one you love lies broken in a bed. It feels so discordant. 

    I was endlessly grateful in that moment that I was in a Catholic hospital, and the saints were with me in a visual form. I normally don’t get that lucky with hospitals. But there was St. Anthony (my third son’s patron saint, no less), St. Joseph, St. Francis. The angels Gabriel and Micheal. And of course, the Theotokos, the Mother of Christ. Christ himself. Everywhere. I could reach out and touch and draw strength. A crucifix above the bed. We were not alone in this shattering moment. We aren’t ever, really, God with us, Emmanuel, but I was grateful for something to fix my eyes on. 

    My faith has never meant more to me than it did in that moment. I could fall into the arms of the Church and be caught in my loss. I had a language, a prayer, to wrap around my grief.

    The next week was brutal. Anyone who has gone through a familial loss can tell you of the bittersweet tapestry that is woven afterwards. Loss and pain and hurt, fraying of edges where the glue has just left us, joy, laughter, hope, but mostly, pain. A person of peace must stay at peace, be the peace when everyone around them is spinning shards of pain. I hope I did this well. I may never know. 

    Utterly drained, I returned home to my own ducklings. The loss fresh. She was the one who taught me to love my children endlessly and beyond the depths. She was the one who taught me how to love caring for my home, how to bring beauty. To come home into the job she had taught me how to do…I kept questioning if I had learned my lessons at her knee well enough. I think I still am. It is in this I feel the loss of her most profoundly. I can’t ask her anymore, hear her wisdom. 

    The months that have followed her death have only grown in their complexity.

    We sardonically refer to 2015 as the year of hell. It’s a bit of a nod to a Doctor Who episode, but in that episode, it’s called the year that never was. Anyways. In the thick of that year, I comforted myself with the thought that if we could survive the year, we could survive just about anything. Two children desperately ill, constant hospitalizations. Transfusions. Surgeries. Broken cars. No transportation. Empty cupboards. Empty stomachs. Near homelessness. 

    “It won’t ever be as bad as it is this year,” I’d tell myself. “ One foot in front of the other. We’ll make it through. Just a season. Just a season. Keep swimming.”

    How many times our heads went underwater that year. 

    How many times have they slipped underwater since. How intense the storms are right now, another year of loss and intense medical and financial pressures that will just. not. ease. up. It feels just as heavy and just as scary as 2015.

    And somehow, in God’s grace and infinite wisdom, our heads break water again, and we can breathe, buoyed by His people. 

    My grandmother seems as effortlessly close to me now as she always did then, as I walk through these dark, dark days. I feel her counsel as I try to make the best decisions for my ducklings. I hear her tell me that His grace is sufficient for this moment. 

    This is what I hear her say, my Grandmother. What she whispers in my ear:

    His Eye is on the sparrow.

    We are seen and known and heard and loved. 

    She teaches me to fly.

  • Ebenezer,  facing grief

    Sing in the dark. Sing anyways.

    (The artwork is gone and sold, but the idea is pretty fresh in my mind right now.)

    I made the mistake of putting Yo-Yo Ma playing Brahms in my headphones as I sat down to write, and I’m not sure that was a good idea, as it’s nearly putting me in tears.

    Man, I’m tired.

    I slipped in here October 15, and I said, basically, given all that was happening, I felt a very distinct pull to hunker down, draw in, nest, rest- create more margin. We really hadn’t taken many flights of craziness or anything from Sept 1 to Oct 15- it’s not like we were running frantic helter-skelter from one activity to another, but the load felt heavy all the same. I think I was verbalizing that day that I felt like I needed to shift how I was carrying the load, as what was left was necessary and good but heavy.

    How could I have known?

    We had a week of re-focusing that week. Really digging down, seeking margin. Deep breaths. Re-evaluating. Lots of books read aloud in candle light under cozy blankets. That whole week James was a bit off. He was tired. He was dozing as soon as he stopped moving and bless his heart, I was wondering what was going on. He’s always tired and he does drop off in sleep and has done so for years and years but he seemed especially exhausted. We went to church that Sunday, and from my position at the chant stand, I watched him get paler and paler as Liturgy went on. He just looked awful. So much so that we left church quickly so he could get some rest, barely staying for the fellowship we usually so greatly enjoy.

    He steadily got sicker and sicker. He tried to work on Monday and ended up coming home early, in too much pain and too exhausted to work. He slept through Tuesday. By Wednesday, I couldn’t keep him awake, and as he hadn’t eaten since Sunday and was barely drinking, I was concerned by the signs of dehydration I could see. Around 10 am, we went in. He was immediately admitted for a kidney stone (technically, acute kidney failure) and dehydration. Less than two hours we spent in the emergency room- we were in his hospital room by lunch. Even on extensive IV fluids and pain management , he was not improving and his pain was incredible. They decided to surgically ‘blast’ the kidney stone the following morning- emergency surgery. He ended up having to have a stent placed during surgery as well. He did not respond well to anesthesia (he has severe sleep apnea) and ended up being on oxygen until midnight that night. His response was so bad that a neurology/pacu nurse was with us in the room until almost ten pm.

    I’ve been around surgery protocol for so long (both for myself and my children) and in my head I knew exactly what was going on, that he would be fine, that everyone was doing their jobs, but I’m not going to lie. That afternoon and evening were terrifying to me. It was a sudden picture of what might/could happen if they couldn’t get it figured out.

    I can handle that in my kids. I did not handle it well in my husband. I was having a hard time compartmentalizing (as I usually do with my children) my care giver role while watching the love of my life suffering and being flat out unable to do anything to ease it.


    I wrote the above nearly two months ago, on Nov 29.

    He’s fine now. He recovered well.

    He pursued better primary care and has been doing a whole bunch to address his health since; things we had sort of shoved to the back burner with all the challenges we’ve faced with Elliana and Josiah. No longer.


    My paradigm has shifted again.


    That’s the thing about life that never fails to surprise me. You think you’ve got it all figured out, learned all the hacks. Swerve and duck and dance. Life laughs back at you and pulls a left hook you couldn’t imagine out of nowhere. Sometimes it’s a nice left hook and sometimes it’s a real mean one. You just never know when to look for the swing.


    Life has been, well, (whispers it softly)…kind to us…the last two months.

    James’ recovery went well, we had some time away for Christmas, our schedule has been light and just right for us. It let us all take a good, deep breath and it has been a lovely feeling.

    I can’t shake the experience I had at James’ hospital bedside that day. Isn’t it weird how sometimes reality has been reality for much longer than we’re willing to admit it has been? I’ve sort of been running from a calling for a long time, so long, really, that I couldn’t even see it as a calling. And yet it gently edged its way back into my heart that day. Yes, it was a terrifying day. I won’t deny it, I don’t think we should, really, when medical trauma happens. It is scary. But it was also a reminder of all the gifts this long journey with two chronically ill children has given me. Yes, I said gifts. Maybe the better word is tools? Both a gift and a tool perhaps?

    I think, for lack of a better word, I have been called to be a healer.

    I won’t ever be a doctor or a nurse, but this idea of creating space for healing, of being the person that sort of channels that for another? That really resonates with me. It calls to mind the idea of doula, but not in birthing babies- birthing space and kindness and peace for someone who is ill or hurting. I’ve realized that this long, deep, dark journey with illness has given me eyes to see what others often can’t; ears to hear (and translate) what is confusing and complex for others; hands to soothe and work and love.

    I used to abhor hard work- cleaning. Scrubbing. Laundry. Somehow in all of this journey of the last four years, that has profoundly shifted for me and I welcome the feeling of setting things aright with prayer and elbow grease. My dear friends Tonia and Elise taught me ora et labora (pray and work) for so many years, but the lessons didn’t sink deep until I walked through the shadows and storms. To be able to use my hands to bless and my heart and mind to pray is a gift; a gift that is not afforded to all. It is a gift to become these things for my children when they cannot- for my husband when he is ill- for others- to give them a soft space to land.

    This all became super salient and fresh in my mind when my dear, dear friend fell ill just before Christmas. She was seriously, seriously ill. She has spent the last month in and out of the hospital. Glory, glory, glory to God, she was able to come home just yesterday. I think of it and literally want to do a little shuffle dance of joy to think of her home.

    All of these gifts have been brought to bear in loving on and supporting her and her family while she was recovering…gifts I never would have had to give if it hadn’t been for all the dark waters we have been brought through. Things I never would have thought of, or seen, in someone else’s illness, had it not been for what our family has been through. Like a special pair of eyeglasses.

    It’s truly given me new visions of what the future might look like for me and my family, and that’s kind of exciting. No matter what may come, I’ve got this little toolbox in my back pocket to pull out as needed. I have something to give to the world in its pain and its hurt instead of just standing agape and at a loss for what to do. Ora et labora. I can listen. I can make space for healing and stillness and serenity and hope and all of those things that the world so desperately needs more of. This is my calling: Sing while it is still dark.

  • Ebenezer

    The shape of a year.

    How do you measure a year in the life?

    In daylights, in sunsets
    In midnights, in cups of coffee
    In inches, in miles
    In laughter, in strife

    -Danny Osmond

    It’s been almost a year since I’ve written here. The pictures tell the story, but it’s hard to show the depths of the darkness and the brightness of the light that circumscribed our year.

    Ellianna got sicker. Much, much sicker. She was hospitalized for a week in late November. We travelled back and forth to Cincinnati Children’s Hospital twice in February and March for extensive testing.  She underwent surgery in May. We know not much more now that we did a year ago. We’ve added a few more acronyms to her laundry list of diseases. We established that she has the MTHFR mutation, and with the help of a nutritionist and treating with methylation donor medication, she has finally turned a corner and has experienced some healing- gaining weight, stabilizing blood work, and better overall color. We’ve learned to treasure the moments and live in them. Will she get even better? We hope. Will she get worse? It’s possible. When the world-renowned specialists at Cincinnati are adding her to studies and consulting cross-disciplines…let’s just settle for our Elly-bird is a rare, rare kiddo.

    I was not underestimating things when I said in my last post a year ago that I was worried what the cost of the constant trauma would be on our family. It was profound. We’ve spent the year learning to heal from all of it; a few family members are in counseling of one sort or another. Mental health is as important and physical health, and I implore you to consider counseling too if you have wrestled with as much medical trauma as we have (or even less! I wouldn’t wish what we went through on our worst enemy.) It has helped us knit back together the strands of the tapestry of our family, which was getting rather strained trying to hold so much. We are a healthier family now in all respects than we have been in the last three or four years. It feels a bit strange, to be honest. Once you’ve got on the adrenaline train of constant medical chaos, it feels very odd when it all finally stabilizes and you realize you can actually breathe again. You almost have to be taught how to do it again, because the stress has made you forget.

    Let’s not forget the light, though.

    We have spent so much time laughing. Splashing. Dancing. Learning to drive. Learning new things. Growing. Thinking. Hoping. Imagining. Painting. Drawing. Building. Loving. The list goes on and on.

    We lived, and we loved. We failed, and we tried again. We fell, and we got back up. The measure of the shape of a year.