• 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.

  • Ebenezer

    It’s time.

    I was a deep water lifeguard my last two years of high school. This was not your run of the mill lifeguarding job. The training was intense and rigorous, and by the time you were done, the state of Virginia designated us First Responders, on par with the requirements placed on EMTs and Paramedics. The final test to become a deep water guard was the most difficult of all. These tests were shrouded in secrecy. If you were not a deep water guard or supervisor, you were not allow to view these tests. To view it would give away the punchline, and probably scare the potential lifeguard from ever testing up.

    My first test involved a guy who was six foot eight and about three hundred pounds. At the time, I was five seven and half his size. I had trained hard, and I was ready. (Or so I thought.) Things were progressing normally until I saw him “drown”. Following procedures, I entered the water and approached him. He was acting like a ‘normal’ victim- I approached him, got him on my tube, and began heading for the closest ladder. A few seconds later, he, in all his height and bulk, began going ‘crazy’. He flailed, he grabbed at me, he was doing all he could to get out of the water. He was going to drown us both. I kept trying. I was nearly drowning myself, at that point, though in the back of my head I knew my supervisors would not allow that to happen. I kept trying. The whistle blew, Brian became his normal, teddy bear self, smiled at me and helped me over the side, as I was exhausted and could barely get there. I had failed.

    What is often not known about active drowning victims (thanks movies!) though it should be obvious- is that they are fighting for their life. When a guard gets involved, it is not uncommon for a drowning victim in their terror to attempt to climb, grab, or otherwise compromise a lifeguard. The final test for a deep water lifeguard is to learn to let go, let the water close over their heads, and push away from the victim- so that they can return to the victim in a better form. Even more counter-intuitive, it is sometimes necessary for the guard to flip the victim into the water, nose down, to gain control.

    This my supervisors told me as I lay panting and worn out on the itchy concrete. It would take me two more times before I could past the test. It goes against everything you know and everything you’ve been taught to let go and let the water close over your head. It’s as much bio-mechanical as it is psychological. Your brain fights you the whole time.

    I’ve thought quite a bit about that test in the last month.

    The first time I heard this song, I was driving alone, a small miracle. It was a good thing too, because barely a few measures in, I was weeping and had to pull to the side of the road, as I couldn’t see. In the play, Hamilton’s eldest son Phillip has just died in a duel. His marriage has been strained to the breaking point even before his son’s death. The way his sister-in-law, Angelica, describes grief throughout the song…it is so devastatingly, profoundly, true. Anyone who has lost a child will immediately recognize threads of their own story. Anyone who has experienced profound grief will hear their story. I still to this day can’t get through the song without emotion. The Hamiltons move uptown after this, out of the flow of politics and intrigue, to a quieter place, to heal.

    August is always a difficult month for us; the month we lost our child, who would be nine years old this year. As I’ve written here before, I almost died myself, because doctors did not realize the severity of what was happening. What no one told me was how the grief would swamp us, my husband and I, and how it would feel easier to just swim down, to borrow a line. I didn’t think I’d live through the pain. But I did.

    I’ve been thinking about that horrible test, the loss of a child, quite a bit this last month, too.

    It’s time to move uptown. It’s time to let the water close over my head and push away.

    The steady attrition of decisions that have happened over the last three years as we tried to fight for an equilibrium between our old life and the new reality of two very sick kids finally crested this month. It’s time to stop running, stop making bargains, stop trying to act like there can be a ‘normal’, because there isn’t one, and there hasn’t been one for quite some time.

    If you follow my blog’s Facebook page, you’re probably prepared for this final blog entry; for other readers, this post is coming out of nowhere at you, and I’m sorry. I’ll try to speak concisely.

    The most clear example I can give you of what I’m speaking of is financially. It’s cold and hard and clear, emotion stripped.

    When Ellianna first got sick, we were your typical middle class family. We had some credit card debt that was almost paid off, a car loan. We were renting, because we had just moved to the area and weren’t sure where we wanted to settle. We thought we had pretty decent insurance. We could eat out every once in a while; Starbucks and Target runs were common. We had a little bit in savings. We were never going to be ‘well off’- we had six kids after all!, but we were happy.

    The unimaginable happened; she got very sick.

    Our insurance, as we discovered, was awful; we never had thought through what a high deductible low payment plan would do to us, what high copays would cost us. Especially because her illness(es) were so mysterious, the coding was never right, and still, three years later, we are untangling a mess that happened in the space of one week, three years ago in February. It’s not unusual even now for a ‘new’ bill to arrive related to that very first admittance.

    When you are overwhelmed, you start making ‘rob Peter to pay Paul’ decisions. We can pay this medical bill on this credit card because surely, this is it…It’s okay to go out to eat tonight, we’re all so exhausted…it’s been so bad, surely it couldn’t get worse.

    It can.

    Ellianna got sicker, and then Josiah joined her. Thankfully, most of Josiah’s major hospitalizations fell after we were able to change our insurance plan, but still. It was too late. Most of the medical debt we have is related to Ellianna’s first few months versus all of Josiah’s (and her subsequent transfusions, surgeries, and hospitalizations) combined.  This debt takes up over half of James’ income.

    As things progressed, and the kids got sicker, other things began to fall by the wayside. Steady maintenance on the van, for example. A dear friend of ours realized what a challenge this was for us about a year and a half in, and then began doing the regular oil changes in the van, helping with minor repairs.

    So many things. So many decisions. I remember the month a fellow parishioner brought us a month’s worth of groceries, full of pantry staples, full of things my kids loved that I couldn’t afford for them. I didn’t realize how much they had brought and they slipped away before it set in- and I remember just sinking down in the midst of my tiny kitchen and weeping, with joy, and with grief- joy that it was taken care of, joy that my kids got some of their favorite foods, and grief- grief that anyone even had to bring me groceries in the first place, grief that we couldn’t provide for our kids. Grief that they were so sick.

    There are so many other stories, so many threads, many of which I can’t tell you because they aren’t my story to tell.

    Anyways…we moved. Home. To Tennessee. James had found a much better paying job with much better insurance. Four days after we moved into our house, the bathtub drain in the main bathroom cracked. It was an old eighties style garden tub- huge. The water poured into the laundry room below. The cost to replace the drain neared a thousand dollars, and we realized that it would be far more cost effective to just put a new shower/tub combo in the bathroom than to pay to have this one repaired. It wasn’t very useful for our family in our present state. We had a little bit of money put by. It would strain us, but we also couldn’t go without a working bathtub for Ellianna- it’s required as part of her protocols that she take a certain type of bath two to three times a week. Given all the facts before us, we made the best decision we could with the facts before us.

    Two weeks later, after all the required pieces had been purchased, demo and rebuild had begun, our van died. The cost to repair the damage would be almost six thousand dollars- for a van that was only worth five thousand.

    It couldn’t get any worse….

    right?

    By some miracle, an odd miracle indeed, as it meant that the reason we could borrow this person’s car was due to an injury that meant they couldn’t drive for months, we were able to borrow a car. Coupled with James’ work car, a car donated to us by a fellow parishioner the year before, we could get the family every where we needed to be.

    Ellianna lands in the ER for pain management and GI treatment not once, but twice in a month, per her GI’s instructions. We dropped almost a thousand on medical co-pays and bills alone in the month of July.

    A few weeks later, during a rain storm, a power issue causes damage to our main electrical board coming into the house, and a computer, our tv, and our microwave are damaged. A few days later, our stove and oven stop working, as well as our dishwasher. Probably due to the same damage. The dishwasher we’ve been able to repair, but the other things- we have no resources to do so.

    A day after the dishwasher stops, James’ work car dies. It, too, has reached the end of its useful life, as the cost to repair the damage is in the thousands, and the car itself is only worth about $500.

    We now own no working cars. We couldn’t afford even a used car right now, and we won’t be able to afford one for quite some time.

    Josiah requires surgery this month- a surgery that was put off throughout the summer for a variety of reasons. Ellianna requires surgery in October. Both children have multiple specialists appointments each month. We are heading into another intense medical season that has been ramping up all summer. 

    A few days ago, my cheap, pay-as-you-go phone stopped working. I can’t even replace it.

    If this is the financial damage of the last three years of this fight, I’m sure you can imagine how it has affected our family emotionally, physically…

    The Lord has given and the Lord has taken away. Blessed be the name of the Lord.

    Financially, it means, as we have done once before, to get rid of anything we can- internet service being one of them- to reduce burden. Which leads me to this final blog entry. I can’t afford internet here at the house, or the web hosting for the blog anymore. I haven’t written here in months, and it is time to let it go. I am deactivating the blog’s Facebook page today.  As I have no access to the rest of my social media, I have temporarily deactivated them all. This blog will sit here until the web hosting renews, at which point, it will shut off too.

    I don’t know when or if I will return. I don’t know what uptown looks like for me yet- what happens after my head breaks the surface of the water again. I don’t know. I’m gonna trust that God is leading me where He wants me.

    We have fought throughout this all that I would not have to go out into the world for work. I have tried and successfully had freelance commissions over the years that would fill in the holes we were often experiencing, but there was a point that it was so crazy medically that I couldn’t even homeschool the kids- all of the children except for Ellianna were put in public school for two of those years.

    But as things have grown so desperate, I must find work outside the home now, and I covet your prayers. I have no idea how this will look or how it will affect my family. None of my children want to return to a public school setting. I have no idea how the kids’ appointments will work, how we’ll cover them, especially the surgeries. I’m not even sure how I would get to a job at the moment, but I’m trusting that those questions will resolve themselves. How I wish I lived in an area with reliable public transport!

    It’s time for me to turn into the storm and face it. Face the grief. Face the reality that my children are pretty sick and we can’t borrow from the future anymore. All we have is now. Especially with them. It changes on a dime. No more running. No more trying to balance things that are inherently unable to be balanced.

    I admit tremendous sadness and grief at watching this era of my life passing. I helped midwife some pretty amazing dreams into reality with some pretty amazing people the last few years- a few have become best-selling authors, one has started a publishing company herself- and it’s been a joy to help birth people’s dreams into solid reality. I always hoped to give birth to my own dreams, too, in time, with my art, but it is not to be at the moment. It’s time to tuck it all away. All this year I have been working quietly on a huge, beautiful commission, one that I am very proud of and can’t wait to see launched in the world- and I won’t get to see it spread its wings and fly. But the fact remains that I kept company with it all year, through the most intense season I’ve faced yet, and I poured my heart into it. I am proud that it will go out into the world without me. It was a worthy companion and I hope it will find many hearts to companion with as it ventures out. I’m glad to go out on a high note. I don’t even know how I will tell you about it when it does launch, but maybe that doesn’t matter. It will be there all the same.

    May the Lord bless you and keep you, dear friends.

    Until we meet again…

  • Ebenezer,  facing grief

    New worlds…

    sisters
    sunflower
    billsbills

    pondplay

    flowerbed

    I remember staring off in middle space on warm afternoons, chin in hands on a high school bleacher. My friends scrambled for the football below, thick with sweat, working towards unseen goals, games to win or lose. I tried on different futures those hazy afternoons- What if I became an artist? What if I travelled the world? What if I never got married? What if I did? I would glance down at my friends’ muddied faces, marveling at their perseverance, and then escape back into my thoughts. I never considered that I could do what they were doing- that I could fix my eyes and fight for every inch and make a mark. I know my school girl self. I thought I had faced hard things. Maybe I had. But I was untested in the arena of life, and I couldn’t fathom that I’d have to face storms so wide and deep that I’d swear I was drowning. In some distant way, though, my school girl self wondered what it would like, facing storms. Would it all change overnight? Would it be a slow burn? The heartbeat of the question underlying all those school girl wonderings- will I be able to handle it? Will I be enough? Will the world fall down?

    Dear younger self,

      I know you have a lot of questions, but all I’ve got for you is Doctor Who quotes. You haven’t heard of the show yet, but it’s worth it. Don’t skip Nine. (Trust me, it’ll make sense when you get there.) But anyways. Here ya go.

    “When you’re a kid, they tell you it’s all… Grow up, get a job, get married, get a house, have a kid, and that’s it. But the truth is, the world is so much stranger than that. It’s so much darker. And so much madder. And so much better.”

    “The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.”

    Life is going to be so much more than you ever expected. Keep your head up. And when a handsome country boy asks you on a date, say yes the first time.

    Love, ME

    The truth is, you can only write about it using conjunctive phrases. Youth makes you think that every answer will be exact. Life teaches you that everything is a both/and, and rarely an either/or. The storms will take your breath away and put wind in your sails in the same sentence. Push and pull. Ironies and contradictions. Very, very few absolutes. I can’t help thinking about the Doctor’s wise words lately.

    Simply put, we returned to UVA. We had to leave in the middle of night to get to the appointment on time. Waiting for us was the elusive diagnosis that has been lurking in the background for two years, frustrating her doctors, making treatments harder:

    Hyperimmunoglobulin D syndrome (HIDS), [Mevalonate Kinase Associated Periodic Fever Syndrome]

    Your life changes all at once and not at all. That’s what storms do. You finally know what haunts your girl. She doesn’t act any different. She has the longest stretch of good days she’s had in months, while the Vacutainers line the counter in the lab, her life force distilled into numbers and titers. Life gets insane for days on end with the back and forth, and she stands there giggling, looking for all the world like a healthy kiddo. She plays in the water like her whole life hasn’t changed.

    I wouldn’t have it any other way.

    It’s our new world.

    A new world in which she has not one, but two, chronic life-long autoimmune diseases. A reality that means that she will never have a normal functioning immune system, that she will always be more susceptible to illness, and that her anemia will most likely also be a life-long fight, a specter always in the background. Two auto-immune diseases that have no cure. You can add all the math and the answer will always be less than you want it to be.

    But it’s our life. Her life. Our new world.

    The last two weeks have been ridiculously intense in ways I can’t even describe. There is no such thing as a good mail day anymore. James and I have faced levels of exhaustion we didn’t think were even possible anymore. It’s our life.

    The same two weeks, friends slipped in and took care of things we couldn’t. They dragged me away to quiet harbor, they made sure that my children’s curriculum will be taken care of for next year, they made me laugh, they made me think, they made me remember that there is a much larger world outside of this intense storm and that land is close.  Our new world.

    I see green on the horizon.