Let Go, Let God — for Addie Zierman’s LinkUp

So, this whole ‘let go and let God’ cliche from so many voices in the evangelical world. I’ve written about and around and through this whole idea from lots of different angles over the years, most especially as this cliche morphs with others — like, ‘he must increase, I must decrease,’ or ‘more of Jesus, less of me.’ There’s something about the whole ‘dying to self’ mentality that has gotten more than a little bit twisted over the decades. The longer I live — and clearly, that has been a lotta years now — the less I like any of it. In truth, I believe that this particular worldview has done far more harm than it has good.

When we advocate for the annihilation of the self — and at its core, this phrase is advocating for exactly that — we are lying to people, big-time. We are teaching something that is diametrically opposed to the kind of life Jesus invites us to live, the kind of life Jesus modeled for us, the kind of life we are designed to inhabit. We are, in a word, deeply devaluing the Incarnation. God took on our flesh — that’s how deeply we are loved. That’s how valued human flesh is — every single human-fleshed person ever exisiting — every.single.one.

Please hear me clearly here: I am not in any way disparaging the sacrificial work of Jesus on the cross, nor am I saying that we are destined for an easy, comfortable life. If the gospel shows us anything, it is that a life lived well is a life lived with generosity, kindness, tolerance, joy and acceptance. It is also a life marked by suffering, loss, sorrow, grief, tragedy and sometimes unspeakable horror. We are human persons, living in a world of beauty and of terror. Life lived here will always be a mixed bag. Yet we are promised joy in the midst of all the mess and mayhem. How is that possible?

Well, it doesn’t happen by abdicating our selfhood. It doesn’t happen by waiting for some kind of robotic activity within our zombie-like bodies under the strange spell of a god who is outside of us and chooses to use us like puppets on a stage.

It does happen when we are open to the possibility of partnership.

When we say ‘yes’ to the sweet voice of the Spirit who woos us with an invitation to join the dance.

It happens when we spend time, energy, effort — and money, as needed! — to discover who we are and how we’re wired. It then becomes our ‘job,’ if you like — our primary task in life — to experience God’s delight in us and to realize that it is God’s delight that both invites and empowers us to use our unique mix of gifts and talents in service of the kingdom dream. And that is going to look different for every single one of us.

There are no duplicates in God’s design. And we will never, ever become clones of anyone, not even Jesus. Hopefully, there will be in us — as in an old, married couple — an increasing similarity, striking ways in which we begin to resemble one another and our elder brother. But letting go of who we uniquely are at the core of our being is not what is required. Not at all. On the contrary, it is when we discover and release our ‘who-ness’ that God is most delighted and most honored. Ireneaus got it right, all those centuries ago, “The glory of God is a human person, fully alive.”

There will always be things to let go of, oh, yes, there will. Most particularly, we must learn to release all the accretions of time and choice that are keeping us from knowing and being our truest selves. Things like pride, fear, obsessive drives of any kind, besetting sins. Those things we must part with — or at least, keep working on!

But that center piece, that true blue, loving, imago dei?  Oh, no — not that. Not ever that. YOU are designed in the image of a loving, creative, hard-working, knows-when-to-call-it-a-day, merciful, justice-seeking, lovely, kind and joyful GOD. A God who sends some spark of divinity right into each and every soul that draws breath on this planet. A God who sees, knows, loves, and draws forth that spark, over and over and over again. A God whose desire is for our good, for our growth, for our mutual embrace. A God who — beyond our power to reason, imagine or sometimes, even believe — wants human beings to jump into the circle and DANCE.

Don’t ever let go of that.

Joining this reflection with Addie Zierman’s, “Let Go, Let God” link-up. Oh YAY for link-ups!

Out Here, on the Brink — SheLoves, September 2018, “Edge”

It’s lonelier than I imagined, this aging thing. I remember being impatient with my dad when we pushed my parents to move from their much-loved last home, built 15 years earlier, into a retirement community a little bit closer to us. He was suffering from Parkinson’s and atherosclerosis and my mom was wearing herself out as primary care giver. We thought the move would provide extra help for her, a bit of respite care. At that point in time they were 85 and 81. As I tried to help my mom get herself organized for the move, Daddy slipped into a quiet much deeper than his usual taciturnity, muttering, “Those places are where you go to die.” I tried to reassure him they were places you go to live before you die. He was having none of it.

I get it now. I’m still a decade behind where they were then, but I can smell the 80s coming at me and I’m not a big fan of that scent, to be completely honest. This is not a culture that values elders, generally preferring those past 75 or 80 to stay out of the spotlight and keep quiet. Part of me is keenly aware of the reasons for that truth: I discover, on an almost daily basis, that the inevitable effects of time and life are sometimes painful and humiliating and not particularly fun to watch. And I get that, too. But still . . . it feels lonely from time to time, out here on the doorstep of eternity.

Don’t get me wrong — there are definite benefits to being ‘retired.’ Opportunities to travel, to read more, to binge on Netflix as needed, and to serve in capacities suited to advancing years and garnered wisdom — these are gifts of this season. But let’s face it, I am on the edge — the edge of the end — and everybody knows it. Maybe I’ll live past my 100th birthday like my maternal grandmother. Maybe I’ll be gone next month. Who knows? And which is preferable? That, too, is open to debate!

In the meantime, I am trying to practice saying ‘yes’ to whatever life remains to me. My father’s choices shut him off from us. Part of that was disease driven, but part of it was his lifelong pattern of choosing isolation when things got difficult. I don’t want to do that. I’d like to dance myself off the cliff, if at all possible, so I’m trying to figure out what that might look like in this aging body, with this aging brain.

 

Please join the conversation (and the conclusion of this reflection!) over at SheLoves by clicking here. 

A Prayer for Those in Need of Goodness and Mercy

Whenever I am invited to pray in public, I try to post those prayers in this space. Sometimes, people ask me for a copy and this is the easiest way to make that happen. In our church community, we find ourselves in a surprising season of discord and misunderstanding. We’re working on it! And the sermon for the day helped, as did the song that just preceded this prayer, “Psalm 23,” with the chorus that begins with, “Surely goodness, surely mercy” Yes, indeed. Please, Lord. (Our primary teaching text was Zechariah 8)

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Oh, Good Shepherd, we gather together in this place,
at this time in our history and in the history of the world, to acknowledge —
out loud and with all of who we are —
that we stand in need of goodness, we stand in need of mercy.
Every last one of us as individuals, and all of us together as your people at Montecito Covenant Church. All of us.

We need to remember, and to give thanks for, the truth that You are on our side,
even though the valley be dark and the way ahead, uncertain.

Lead us, O Lord, into green pastures. Restore our souls, refresh us with the water of life, remind us that we belong to You, and remind us that You are good.

Even as we acknowledge that goodness in You, O God, we must also own the truth that we are sometimes not so good.

We step on toes, 
we say harsh things,
we talk about others when they are not present,
we make judgments with incomplete facts,
we make assumptions,
and stand on entitlement,
and fail to practice grace and peace.

Forgive us, O God. Forgive us. And help us to forgive one another, too.

The climate in the world around us right now is not particularly conducive to forgiveness, nor to goodness and mercy. So it seems even more important than usual that we — as members of Christ’s body — practice what we preach. Will you help us to do that, please?

The text before us today reminds us of some of those things we preach, and we need to hear them, we really do. Bless Pastor Jon as he brings us your word for today. Give us ears to hear, O God, give us hearts to understand, and give us feet that walk out that truth into our world, beginning with the patio, and then the lunch tables we will share together a little later today. May your grace and joy infuse every conversation, guiding us into wisdom, and good decision-making.

Most of all, Lord God, will you help us to let your goodness and mercy inform what we say and do in our day-to-day living? That is not always easy for us. Some of us are in the throes of deep grief during these days of summer —

loved ones die,
relationships dissolve,
circumstances take a nosedive,
hard decisions must to be made,
ugly voices rise to the top in too many dialogues,
children suffer,
politicians seldom tell the truth,
poverty of all kinds surrounds us,
wars never end.

To us, the world feels a shambles, and we forget about goodness and mercy.

But we are not YOU, O God. Help us to look around us and see what you see — a world in need. . . yes. But a world that is also deeply loved, a world held in place by a Good and Merciful Sovereign, a world in which we are invited to partner with that Good Sovereign in the necessary work of restoration, reconciliation, recovery, and renewal.

We give you thanks this day for the evidence of that good work in the lives of those graduating from Bethel House and the Rescue Mission last night, celebrated right here, in our sanctuary. And we give you thanks for the changed hearts in thousands of teenagers, including some of our own, who were at the CHIC conference in Tennessee this past week. Thank you!

Bless and encourage every hurting heart in this room, O God. And use each of us to make that blessing real. Help us to be good neighbors — to each other, and to all those we meet day by day. Because everybody, from the grocery clerk to the rude driver behind us, needs a little goodness and mercy in their life, too.

They need the truth that we already know: that all of us belong to you — every last, mixed-up, weird and wonderful one of us.

Glory be.

In the name of Jesus — who loves us, who died for us, and who, by the power of the Spirit, was raised to new life, the One who dwells today in the church, including this one, in that name, we, together say,

AMEN.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Redefining Terms — For SheLoves, May, 2018

Anyone who has read my work for any length of time will know that the content of this month’s essay at SheLoves has appeared, in slightly different form, here and in an ebook I put together about five years ago. It’s a BIG topic for me, essential to my spiritual and emotional health and sanity and I’m happy to have another venue in which to speak it true. I believe this to be one of the most important truths of our faith, one that can help us navigate any misguided theological input from our past. I’d love it if you would click over and join in the conversation at SheLoves.

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When I was a little girl, faithfully attending Sunday school each week, we had a little saying that went like this: “Jesus, Others and You – that’s how you spell JOY.” And I inhaled that sentiment like it was the sweetest of perfumes. YES! We should always be last on the list, giving ourselves away to Jesus and to other people. That’s how you live like Jesus, right? That’s how you are a good girl, a truly good girl.

As I got older, that simple phrase became a little more complicated, and the scent of it a little more cloying. This time, it went something like this: “He must increase, I must decrease,” lifting the words directly out of the mouth of John the Baptist near the end of chapter 3 in John’s gospel. From there, it morphed into, “More of Jesus, less of me,” and the older I got, the more terrified I became when I heard those words.

I didn’t recognize it as terror initially. In fact, I didn’t know how deeply this message had affected me until I began to be interested in spiritual direction. I first learned about direction by reading a series of novels, of all things. In the late 80’s and early 90’s, British author Susan Howatch wrote a great bunch of stories about priests in the Anglican church and I devoured those books when I was in my 40’s. They were earthy, to be sure, but they were also rich and filled with beautiful tidbits of theology and ecclesiology. Throughout the entire series, some of my favorite characters were spiritual directors.

So I began to look for a director, and the first woman I interviewed handed me the beautiful Prayer of Abandonment by Charles de Foucauld. It’s a beautiful prayer, filled with love, joyful submission, and trust. But I could not pray that prayer.

I tried, but I’d get to the word ‘abandon,’ and start gulping great gasps of air. I prayed about it, I talked it over with the woman who had given it to me, and her immediate response to me was this: “Diana, you need therapy. Not direction.” (Did I mention I was in seminary at the time and beginning to hear God’s call to professional ministry? What??? Pastors might need therapy? Well, that’s a great big YES.)

I spent the next twenty years trying to unpack what happened inside me as I read that prayer and, in the process, I have taken a long look at that old Sunday school saying and the use (or mis-use) of that verse from John 3. And I’ve done a TON of personal work on all kinds of important things. . . all because I gagged on the word, “abandon.”

I spent the next twenty years trying to unpack what happened inside me as I read that prayer and, in the process, I have taken a long look at that old Sunday school saying and the use (or mis-use) of that verse from John 3. And I’ve done a TON of personal work on all kinds of important things … all because I gagged on the word, “abandon.”

We all have a fear of abandonment. Along with the fear of falling, it’s one of the most primal fears human persons carry. But what I was feeling was not quite that, was it? This is what I finally realized: I was terrified of disappearing. I had somehow inhaled some really lousy theology along with that early Sunday school ditty. I had taken the words of John the Baptist completely out of context and come to believe that the way to the heart of the gospel was for me to somehow be sublimated to the point of extinction, for Jesus alone to inhabit this flesh.

There are all kinds of interesting reasons why this particular woman came up with these particular fears and most of them, I understand a whole lot better now than I did then. But what I want to talk about here is the sometimes dangerous way we throw words around when we teach and when we preach. Because this is the beautiful truth of the gospel, the powerful, life-changing, miraculous truth:

As we learn more about the heart of Jesus, as we open ourselves to the transforming work of the Holy Spirit, this is what happens: More of Jesus, MORE of me.

Yes, you read that right. Think about it for a minute: why would God go to all the trouble of creating the wildly different and wholly beautiful human race if the goal was for each one of us to disappear, to lose our distinctiveness, to be pushed into the waters of oblivion that some have chosen to call “Jesus?” Is that wave supposed to cover us completely?

In some ways, YES, YES, YES. We are covered by the grace of God made tangible in his sacrificial death and resurrection. We are; yes, we are.

BUT also, NO. We are not lost when we are covered by the grace of God. We are not ever lost. No. WE ARE FOUND.

The true me, the real me, the best me, the apple-of-God’s-eye me, the very particular, very unique, highly individual me is given space. Room to breathe and grow and flourish. The heart of the mystery, the wonder is this: the more we allow Jesus to fill us with love, to inhabit us, the more ‘me’ we discover. The me that God had in mind when he created the world, the me that reflects the image of God, the me that Jesus sees when he moves in for good.

Today I know that God has no desire to devour me, to make me some kind of freakish “walking dead” person. No. Jesus came to this earth to show us what a truly human life looks like. And he wants us to discover what our truly human life looks like. It’s true, we will look a lot like Jesus. But we will also look like ourselves. 

A Beautiful Book — Book Review: “Forgiving God,” by Hilary Yancey

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Those of you who subscribe to my monthly newsletter already know that this one was on the top of my to-be-read pile as April began. It took me exactly ONE DAY to read it, and I am re-reading parts of it regularly.

This book is the real deal. Combine a tender heart with a first-class brain, a fierce streak of independence with a humble desire to yield, add to that a stubborn commitment to do it right and do it well, what do you get? Hilary Yancey.

She is young — younger than my eldest grandson. She is SMART — working toward a PhD in philosophy at Baylor. She is a wife and mom — married to author and soon-to-be Anglican priest, Preston Yancey, and mom to Jack and June (short for Junia). Over and around all of that is this truth: she is a force to be reckoned with. Also? She is an earnest, open, willing-to-admit-questions-and doubts follower after Jesus. 

She writes beautifully, with a lyrical style and startling honesty. They tell me poetry and philosophy often go together and this book makes me believe that, big-time. “Forgiving God” is the story of Hilary’s first pregnancy, just six months into marriage. This particular journey into motherhood was difficult, mystifying, troubling, terrifying and ultimately, salvific. It is both humbling and inspiring to see how she and Jack not only survived a troubling pregnancy and a 43-day stay in the NICU, but somehow managed to triumph over every setback, every complication. 

At what was thought to be a routine 18-week ultrasound, her son Jackson was diagnosed with a rare and severe facial deformity. With each week that passed, her now high-risk pre-natal care visits brought more and more difficult news. Teetering between praying for a miracle and trying to learn all she could about how to deal with what could come for her newborn boy, Hilary takes us into her own dis-ease, disappointment, and wonder. She also shares with us some of the pieces of her journey as a graduate student, eloquently positing big ideas about God’s sovereignty and foreknowledge. She does both — the personal story-telling and the philosophical musing — exquisitely well.

I am grateful for this book because of its beauty and power as a ‘good read.’ More than that, I am grateful for it in my practice as a spiritual director. I meet regularly with friends who are dealing with all kinds of issues, some of them extraordinarily difficult. Hilary’s thoughtful, intelligent, and ultimately hopeful words have already helped some of us find solid ground in the midst of what often feels like very fluid terrain.

This is a memoir that is a gift to read — and to re-read. I highly recommend it. Buy it, give it away — and then write a short review at as many places as you can think of. Hilary is not doing the usual big promotion push, so any help we can offer would be grand. 

Undone: SheLoves — February 2018

Well. The theme this month is “hidden,’ and what came out of my fingertips surprised me. True confessions time, friends, that’s what this one is. Start here and then click over to SheLoves to finish reading and to tell me about how you choose to come out of hiding . . .

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In my therapy session this week (yes, I talk to a therapist every week, have done so for 25 years), the word that emerged was this one: ‘undone.’

Exactly right.

The entire session had felt like a chaotic purge of some sort, one story after another, tumbling out, seemingly unconnected. And yet, as she so often does, at the end of it all, my therapist said to me, “Diana, you are talking today about things that are undone, starting with yourself.”

Ouch.

SO on target, and exactly what I needed to hear. Over the course of my L O N G years of living, I have learned that it often takes this kind of unfettered babbling for the underlying truths of my life to emerge. Why? I think it’s because much of the time, we are hidden people, tucked away, even from ourselves, and turning the spigot of story-sharing to ‘on’ loosens the fences we have built. This is especially true when we are feeling under siege, which has been my default mental setting for many months now. Hard thing, after hard thing, after hard thing — and as I have struggled to make sense of it all, I retreat behind this huge, self-protective bunker.

Sometimes that kind of hidden is a good and necessary thing. When life goes crazy, we need to marshal our resources and hunker down. Pulling in every excess emotion and lining them up in a safe place enables us to more forward, offer help, stand next to others who are fighting similar battles.

But in the long haul, remaining hidden becomes a liability, not an asset. We need to come out from behind the barricade and take a good, long look at everything that is happening — outside of us and inside of us. And for me, this week, that meant admitting that way too many things in my life are in a state of undone-ness.

There are at least two ways to define that word, seems to me. Undone in the sense of incomplete, and undone in the sense of unraveled. Both are true for me — and my guess is, for most people — at multiple points along this journey called life. There are projects to complete, relationships to tend, ideas to make real. And then, there are people in terrible trouble, decisions that cause chaos, and situations that appear hopeless.

Incomplete and unraveled, yea and amen. That is me right now. . . 

Follow this link to continue reading and to join the conversation . . .

Wretchedly Familiar: When Life Feels Unfair — SheLoves, November 2017

Have you ever had a really bad day, or an even worse week? How about a terrible month? Try multiple months? Yeah. That’s kinda like where I’ve been this year. So I did some reflecting on that over at SheLoves this month. The theme this month? “Return.” Please come on over and join us!

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Wasn’t it just two months ago that I wrote about lament in this space? I checked, friends, and yes, it was. In September. Today, I find myself needing to return to those songs-in-a-minor-key for a while longer. October’s theme opened my sad heart to a season of rejoicing, for remembering all of the gracious things in my life for which I can joyfully and loudly thank God.

But at this moment in time, as I sit down to write for November, I find the syllables of lament are oh-so-necessary. I am returning to the language that lets me enter my own sadness, that gives me permission to fully experience the pain of this moment on the journey that is my life.

One month ago yesterday, an ER doc told me that I had blood clots in both lungs and that one of them had caused an ‘infarct,’ which means tissue death (!!), thus causing the sudden, severe back pain of the previous 30 hours. He sent me home that evening with a new blood thinning medication, to be taken twice a day for the next month. I was also told to visit a long list of specialists, including the hematologist who had been working with me for the last seven years. He would prescribe a new drug at a new dosage to try and prevent this from happening again.

Because, you see, it had already happened once. Which is exactly why this particular ‘returning’ was not on my bucket list. The first event in 2010 put me on the only blood thinner available back then – Coumadin, a drug difficult to manage and which complicated my life for five years. In 2015, I managed to tear a muscle in my abdomen, causing significant internal bleeding and sending me to the hospital for two days. At that point, they reversed the effects of the Coumadin and took me off blood thinning meds, hopefully forever. Hooray!

Now, I am back on them — this time, for good. There are newer versions today, easier to manage, but not without risk. That is sobering. I am seeing a long list of specialists to rule out any other kind of damage to heart or kidneys and must take it easy for another couple of months. And all of it feels so wretchedly familiar. I did not want this to happen again, but . . . it has.

So now, what do I do about this particular ‘return’ in my life? Part of me wants to put on my big-girl pants and suck it up. That’s my go-to, life-long pattern. It feels familiar and even a little comforting. But the reality is, I am now seven years older than I was the last time this happened. And I’m in a season of grief and loss. SEVEN people close to me have died since my mom’s death in April. Two others (three, if I include myself) have received difficult medical news, all involving ongoing treatment, one with a terminal diagnosis, most likely in the next few years.

I feel inundated by sadness, overwhelmed by all the pain in the world at large and in my circle of family and friends in particular. And far more than action, or even re-action, I find that what I need is . . .

Click right here to discover what is helping in this season . . .

Charlottesville: No Words — SheLoves, August, 2017

Do you find yourself at the limit of things right now? I do. Here are my reflections for SheLovesMagazine this month — you can begin this essay here, then click over to join the conversation there. I hope you will!

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I like to think of myself as a person of words. I love to read, talk, preach and write — all of which require some facility with language. I even had a dear friend whisper in my ear a week or so ago, “You know what I love about you? Your vocabulary!” My what?? Well, okay, I’ll take it!

But at this particular moment in time, in the aftermath of the horrors of Charlottesville this past weekend, I find myself at a complete loss. I discover very few words anywhere within my usually active brain. I feel unmoored, uncertain, frightened and deeply, truly sad.

I am a person who does not understand cruelty. So deep is this lack of comprehension that I often feel powerless and rudderless in the face of it. I’ve known a few people in my lifetime whose currency is cruelty. Blunt, thoughtless, critical remarks are their stock-in-trade, and every time one of those remarks is directed toward me, I stutter and stumble around, trying to find a comeback, a simple sentence that will stop the flood of vitriol.

Nada. Nothing. No words.

What is with that??

It’s not that I want to be cruel back. Honest and true, it is not. It’s that I simply do not know what to do in the face of it. If it’s directed at someone else in the circle, I can sometimes muster an objection or a clarification, but I never make it as far as a firm, clear, push-back that stops the ugliness. More often than not, I beat a retreat as quickly as I can and then ponder it all for days and days. What could I have said? What could I have done? What should I do next time?

Today, I am past pondering. I am done. And the one word that keeps coming back to me, over and over again is this one: ENOUGH. Stop. Just stop. Put away your swastikas, burn them all. You may have a legal right to your misguided opinion, but you do not have the right to name-call, bully, harass, or drive your automobile into a crowd of folks who disagree with you, and are brave enough to stand up and say so.

There are no more cheeks to be turned, my friends. None. And I refer you to the fine work of Walter Wink, written decades ago, about the subversive nature of the words of Jesus that have been so abused in the centuries since they were uttered. Turning the other cheek and walking the extra mile were acts of resistance to an intolerable government and they are beautiful things when rightly understood. They are not useful as tokens, bromides, or any other sugar-coating of evil words and deeds. Evil demands resistance. Full stop.

And what we witnessed this past weekend, what we’ve seen over and over and over again in the systematic killing of people of color, is evil. It is an evil that has its roots in fear, the ‘elephant in the room’ I wrote about last month, but it is evil, nonetheless.

Continue reading at SheLoves today, friends. I’d love to hear how you’re doing and, even more importantly, what you’re doing about our national sin and need for repentance. And if you are not a resident of the USA, your comments and insights are always welcome — we clearly need help. Just click right here.

Waking Mathilda — A Book Review and A Heartfelt Recommendation

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There are lots of stories waiting to be told in this world. Some of them are interesting, good to read, mildly educational, even helpful. Others are lightweight, distracting, bring a wry smile or a loud laugh. There is room for stories like those — I read them a lot and I share about them here, from time to time.

Then there are the stories that are startling, stunning, that move you out of your complacent satisfaction with the status quo. Stories that send you to your knees in thanksgiving for your own particular patch of suffering and struggle, simply because what those stories tell is so overwhelmingly difficult.

I know a few people who live such stories, some of them quite close to me. Most of those people would never attempt to write their stories down — out of fear or exhaustion or lack of skill.

Then there is Claire Crisp.

She knows all about exhaustion, and she knows all about fear, but she is also a skilled narrator who is not afraid to tell it like it is, without flinching, without apology. And tell it she does in this beautiful book, “Waking Mathilda.”

This story was birthed in one parental decision that changed the trajectory of a family’s life forever. It was a decision made in good faith, for all the right reasons, and it was a decision that should never have had the outcome it did.

When Claire’s lovely young daughter, Mathilda, was three years old, she and her husband — on the advice of their doctor — made the decision to give her the H1N1 vaccine. She had had a bit of a rough start in life and the flu that year was predicted to be harsh and deadly. So they took the time and care to take her to the clinic near their home in England and make sure she got her shot.

And then, everything started sliding downhill.

This is a story that must be read to be believed and I strongly recommend that you order yourself a copy TODAY. It is beautifully, hauntingly written. It is rich with information that never feels in the slightest like ‘facts.’ It is a story that is hard to read at points, a story it is almost impossible to imagine living. 

Yet, live it, they did.

Mathilda is the youngest person ever to be diagnosed with narcolepsy, a difficult and debilitating neurological disorder that essentially causes the sleep center of the brain to go haywire. Reading about the long, painful process of discovering what went wrong with this active, intelligent, interesting little girl is heartbreaking to read.

It is also inspiring.

Why? Because it is a story of persistence, of courage, of commitment and of love. Claire never gives up. Never. She does research, she insists that something is wrong, very, very wrong, even when medical personnel ignore what is right in front of their eyes. She and her husband exhaust themselves trying to care  for a child who cannot sleep at night and cannot be sensible for much of the daytime. Their older two children struggle to understand what has happened to life as they knew it. Every one of them is remarkable.

This book reads like a terrifying mystery novel, except there is nothing fictional about it. Pieces of the puzzle begin to come clear, a visiting doctor really looks, really listens, and makes the correct diagnosis, a clinic in Stanford CA does research on an expensive medicine. That medicine is not available in England and a life-changing decision for everyone involves an international move, and a huge gamble. No one as young as their daughter has ever been treated with this medicine. Will it work?  

This is a story I could not put down, and neither could my husband. This particular journey will never be over for Mathilda — she will live with the effects of this disorder for the rest of her life. But she, and her parents, have found some answers. They have begun to see the light at the end of the tunnel. They’ve built a new community, in a new country. Claire has become an outspoken advocate for narcolepsy sufferers and those who care for them, and Mathilda is blossoming into a charming, hardworking, committed student who happens to deal with a dreadfully messed up brain. 

A remarkable read. Do yourself a favor and read it ASAP. Then get a copy for a friend, too.

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The Truest Advent

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I sit and watch the light play across the beautiful angles of her face. Even at 95, those cheekbones are breathtaking. She is tired today, battling a mild infection, with little to no appetite and even less energy. The sharp angle of the winter sun is unexpectedly flattering as it gently flickers through the window, and I draw a sharp breath as those too-familiar tears begin to form behind my eyelids. 

“Oh, Mama! I love you so. Please, Lord, let her go to sleep and wake up in the New Creation. Enough, okay? Enough.”

But who really knows how much is enough? I don’t have any special insights, only my own bedraggled emotions and growing fatigue. To me, it feels like it is time. Time to be released from this ‘body of dust,’ time to rest from the struggle, time to breathe in and never breathe out again.

We did not go out to lunch today; we barely made it from the dining room to her own sweet space, with its lounge chair in the corner, by the window. “My arms!” she cried softly as we walked. “They ache.”

Truth be told, everything aches. Every cell in her body.

As she slept in that chair, I moved my hand slightly, the one that she was clasping with both of hers. She roused a bit, turning to look in my direction.

“Oh, Mama! Thank you for being such a good, good mother,” I cried.

She didn’t understand me, so I said it again, more slowly, more loudly. She smiled slightly and said a simple, “Thank you.” Somehow her half-sleepy state made the usual questioning unnecessary. There were no confused looks, no puzzled frowns. None of this response: “I’m your mother?? Really??” 

None today. None at all.

One week ago, that’s all I heard. I came home shaking my head at my husband. “I don’t know how much more of this repetition I can navigate! We spent our entire 90 minutes together today asking and attempting to answer the same 5-6 questions — over and over and over again. Oh, Lord, give me patience!”

He and I were getting ready to leave town the next morning, our annual anniversary getaway to parts north. We both needed it — time and space to savor an ocean view, good food prepared by someone else, and quiet time together — no expectations, no obligations, no schedule. And it was good. Very, very good.

They called me from the dementia unit as we were driving home yesterday. “She has a UTI and a low-grade fever. Is it all right with you if we put her on antibiotics?” 

Yes, it was all right with me. UTIs make dementia much worse and increase confusion and disorientation. She doesn’t need any escalation of those symptoms and neither do I. But this time around, the infection plus the added medication led to extreme exhaustion — one more sign of decline, diminishment. 

And yet, as painful as it is to watch that happen, this time I will admit that my primary response is relief and gratitude. She is heading in one direction only; and today’s exhaustion underlined that truth for me. My mother is very old. She is very frail. She is extraordinarily confused.

She is also beautiful, grateful, loves people (even when she hasn’t a clue who they are), sings the old songs and hymns with a higher degree of accuracy than her illness might lead you to expect, and generally enjoys her life. It is not up to me when that life will end on this side of the mysterious veil that separates us from the eternal.

There are, however, some decisions that are up to me. When and how to treat illness, for one. I think I know what I will and will not allow — mom and I discussed it all, long before dementia took over — but until illness or accident happens, I suppose it’s all pretty hypothetical.

So, in addition to those prayers for patience, I also pray for wisdom, grace, kindness and insight as my mother moves ever closer to the end of her long and remarkable life. I will miss her presence in my life more than I can adequately put into words, more than language will allow.

 

Then again, I have been missing her for a very long time.

“Oh for grace to trust him more!”