• 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.

  • facing grief

    Suspended…

    winterspring

    On a warm evening last week, a neighbor a few doors down was practicing on his drums. Whomever it was clearly had some skill- here it was jazzy, here it was crisp and martial, on it went from one style to another. Towards the end, the drums had fallen silent for a few minutes. I assumed my impromptu concert had come to an end. Just as I had given it up for gone, he began again. This time, as he played, each measure stretched out longer than the one before it. I was surprised at how simple percussion could portray sadness, and then longing. By the time he reached the very end, the tension was palpable. It was then that he did a beautiful long swirl on the cymbal, a shushed sound that felt like a flower falling from a tree or a woman twirling in her skirts. Like whispered beauty. On my ear it felt a poem.

    I thought of his percussion poem as I walked the trail this weekend. The weather had snapped un-naturally cold in the middle of spring. The forest all around me looked other-worldly. Suspended animation. Green budding trees stood next to still golden, nearly ghost-like fall foliage. It felt Narnian. It felt as if Mr. Beaver was whispering covertly Aslan is on the move in my ears. The tension between the seasons was so palpable that if felt fragile, breakable. Will winter win and the buds freeze, no flowers? Or will Spring have her say and emerge beautifully triumphant? The beats stretched out, and out, and out…

    Suffering so often feels like an unending winter. Barren and stripped. Desolate. Like living on a wind-swept cliff’s edge. No margin. Every choice hemmed in. Step wrong and you might fall off the end of the world. I know this in my bones, I feel the pressure of it weighing down hard. The hard crash against the drum with each new sorrow and confusion. And yet, and yet.

    I know Aslan’s name. My friend wrote to me the other day”…I know the Lord to be as Lewis wrote of Aslan… ‘good but not tame’…and I believe that Christ came here in part to be with us in suffering…not ignoring, or trying to ‘explain it away’…Christ is our Light in darkness.” The way is dark, but not without hope.

    I, like everyone else, want to push forward to the punch line, the sweet hallelujah, the gentle swish on the cymbal. The bursting forth of flowers, everywhere, jubilant spring. It’s hard to write about a place that has no easy answers. I want to be anywhere but here. But it is in this suspended place that I am called to be, and I must dwell here, lean into the long tension between the beats.

  • facing grief

    Liminal space…

    springhope

    I have the distinct remembrance of a scene in a movie or two, where someone is scribbling frantically along a chalkboard, spools of numbers and symbols in their wake, feeling along the board with their other hand, so close to the problem at hand that it’s not until the camera pans back that you can see this huge length of board stretching out behind them, full of mysterious answers.

    That’s how my mind feels at the moment.

    I’m scribbling in the dark.

    We were dealt one blow after another at the beginning of this week. It’s not that any particular part of it was horrifyingly bad. Everyone is okay. Maybe it was the rapid succession of bad news. Maybe it’s just because it was one more thing. But this time…James and I both drowned underneath the weight of it all.

    It has been a most difficult week.

    I remember laying sprawled in the backyard late on Wednesday, looking up at the stars and constellations through the feathery reaches of the trees, the moon framed in a tangle of branch. All I could think of was the intricate design of the heavens, how the language and the design of the stars is so precise that the Philae comet lander was only off by some twenty two seconds after traveling for nearly ten years to reach its destination. Symbols and equations sprawled across a chalkboard…

    I found comfort in the endless stars, not one of them random. The moon pulls the seas, the winds obey. The water falls on the earth.

    He is faithful, He is faithful, He is faithful.

    Star dust runs through our veins.

    Ever so slowly I’ve found my breath returning, the inexorable weight easing.

    This liminal space is so very hard.

    I watch the return of Commander Scott Kelley’s return from the International Space Station after a year suspended between earth and moon, and somehow, I feel a kinship. Teach me how to space walk, I want to beg. Teach me how to live in the tension of change. Held and yet un-moored. Spinning at 17,000 miles an hour above an earth that heaves. Teach me how you lived through that. 

  • collecting stories,  facing grief,  Faith,  the learning arts

    Drink deep of fairytales…

    coffee leaves light harry

    “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

    rainywalk  fire moon

    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.

    wandraise

  • facing grief,  scrap happy

    Scrap Happy: Baby Book Edition

    babybookdesk babybookbegin babyfavorite babytosie

    I am some what surprised to announce that I finished not one, but two albums this weekend. Not only that, they are two baby books for two babies that are now four and seven, respectively. Ahem. Life hasn’t been crazy, at all. These are both albums from the now defunct Creative Memories line that are specifically made for 4 x 6 photos and are pre-formatted with spaces to write and record and the decorations already provided. I had not been very interested in these in the past, but after this weekend, they definitely have an appeal. I finally told two stories that had been waiting years to be told- total win in my book. I don’t even know if there are any companies that make albums like this now…the whole scrapbooking industry has collapsed since then. (le sigh.) I sat and did most of Josiah’s while watching football on Sunday. (My beloved Broncos won, hurrah!) I might have to find more of these, honestly. As much as I love the artistic side of making unique layouts, sometimes you just want to tell the story without worrying about the details, and these definitely fit the bill.

    On a quieter note…

    Scrapping Josiah’s birth was hard. Even seven years later. It is only now within the last year or so that I have realized how much trauma we underwent when we lost our baby, how traumatic and scary my pregnancy with Josiah was- so much so that I couldn’t really enjoy the pregnancy for what it was- an uncomplicated, beautiful, lovely pregnancy. I found it very difficult at the time to even be around pregnant women, so fresh the loss of our child was to me, and yet I was pregnant again, Glory to God…but everyone was terrified. My OB, my husband and I…we were all so uncertain. I had people telling me I should abort Josiah because obviously, coming so quickly after such a horrendous loss, there would be so many problems. He hid during many ultrasounds, making diagnoses uncertain…I think that is still what shocks me now. Josiah was born so beautiful and healthy and whole. No medical issues at the time. And had I done what everyone demanded I do…my word…this beautiful lovely soul, our monkey boy, who giggles like a maniac and lights up our whole home with his joyful exuberance, even now, as he suffers….it just. He is a gift from God, truly. He is our miracle child and continues to be so.

    It was tremendously healing in ways I didn’t even expect to finally pull these photographs together and tell the story of his first year. I used to think I’d never be able to do it, so painful it was. It feels wonderful to be able to hand these books to their owners now, watch them discover their story.