OCD in the hospital

A few more entries from my "journal" during our recent hospital stay with our lily, and then I'll try to get back to that "recovery series"!

Christie arrived yesterday, and with my two precious nieces quite literally cleaned our hospital room floor for me. Little hands spilled Christie’s entire water bottle, and both pairs of little hands helped mop up. They’ve been all over the floor and then all over everything else: lily’s bed, my bed, ann’s bed, the chair, the table, the hospital food tray… my brain finally stopped keeping track of the things that touched things that touched the floor. Once again, Christie and her babies have done my ERP for me.

* * * * * * *

The day before surgery, lily says: “This reminds me of ‘The Wild Robot Escapes’ when Jaya and Jad helped remove Roz’s transmitter so she could escape from Hilltop Farm. I’m just like Roz! I have to have my transmitter removed so I can escape from the hospital and get back to where I truly belong.” Lily’s story-loving brain is churning to process what is happening to her.

* * * * * * *

“Transmitter’s all out.” Dr. Matthew, Neurosurgeon, bends over lily’s waking body to whisper in her ear, coax her to wiggle her toes.

* * * * * * *

About an hour after arriving in PICU, she’s alert enough to ask:

“OK, but Mom, what’s it really called?” (She means, what she’s dubbed her transmitter).

“Well, I think the doctors said” (digging deep for the words I had to practice over and over) “it’s called a Pilocytic Astrocytoma.”

“Oh." And then with a sigh: "It’s hard work getting my Pilocytic Astrocytoma out so I can escape from the hospital and get back to where I truly belong.”

I remember they warned us she might temporarily lose her ability to speak. 

I ask her to take a shot at spelling the word I couldn’t grasp or repeat the first time I heard it, and she gets it pretty well right, just two letters off. Then,

“I hope ann doesn’t get it… or you or dad….”

My head buzzes, my heart thuds.

“No, no, this isn’t like that. It just grew in your special brain.”

“Is it because I like robots so much?”

Oh lily, you’re back. It’s really you, all you; their huge fingers didn’t slip, stayed steady, didn’t nudge any of your delicate grey gears that turn and churn out your gifts to the world.

And now I think you have glitter in your brain.

Tumor

Note: this post was composed the day of the surgery, and published much later. To avoid confusion, I must direct you to the following post to find the happy conclusion to this saga! We are learning words like “resection”, “lesion”, “ataxia” and “Learmonth’s phenomenon”.

We pass them around like a hot dish of a grandmother’s brussels sprout casserole nobody wants to eat: “tumor,” “malignant,” “benign,” “the C-word.” 

“Brain surgery” is no longer one of Plato’s theoretical concepts, but something happening to our daughter, today. 

After that first scan I watched myself receive the words, “Unfortunately, we found something…”. I was surprised at my lack of panic. But then words came out of my mouth that I hoped never would, right there in front of my child. I was not prepared for this. I did not rehearse.

This morning I wake and the thought slowly forms in the pre-dawn as if from a script I am reading the first time, someone else’s thought: “lily goes for surgery today.”

I don’t know how to play this role. I can’t identify with this woman walking down this long hallway to the surgical suite beside a waif of a girl with a mass in her brain. I watch her and think, “That is the mother,” but I can’t imagine what she should be thinking or feeling.

The head surgeon, the one with the steel blue eyes, takes my hand in his huge one and fixes my gaze with his confident one. 

There is little to say. So I indicate the stuffy lily chose to keep with her and I say, without letting his eyes go, “She sheds glitter.” 

Pathology

The pathology report comes back.

Benign.

Christmas Reflections

Lily opened a window on her Advent calendar one day this Christmas and found the verse Isaiah 11:6. We talked about the strange image of these animals sleeping together with a little child for leader. “It’s talking about peace,” I explained. Lily was struck. She declared it to be her “new favorite verse--because I love peace.” It was a poignant moment for a child whose life had been much devoid of peace recently. 

Peace this Christmas meant being home together as a family. Peace meant having a routine. It meant gathering each night around our “Jesse tree” (a family tradition to review the Bible’s redemption story during Advent). It meant no headaches and screaming and vomiting. It meant no early morning trips to emergency, only to be told to go home and give a Tylenol. It meant no IVs and no nurse call bells and no pokes and flushes and vital sign checking. It meant Lily tolerated drinking and teeth brushing and bathing. Peace meant the simplest things, and it meant the world.

I barely did any shopping or baking or decorating or crafting or any of the usual hustle I’ve done around Christmas ever since I was eleven and awake to the drive, the search for that elusive “perfect Christmas”. I was amazed at how much rest there was in simplicity. I soaked in every moment of twinkling lights and silence and loved ones nearby, especially lily. Her bright eyes and vitality and creative spirit bathed everything with a new glow this Christmas.

Recovery Series: Part 1-Getting Past Perfectionism

I have my hands full--and my heart full. A new baby girl, lily's been given a new diagnosis (more on that likely to come), a new job, fundraising, traveling, unpacking and setting up in a new apartment…. will life ever slow down? Maybe not? 

I have many more ideas for this blog as life pushes my brain in different directions of learning, and I want to share it all, but there is never enough time. 

In the meantime, I’ve been sitting on a series about recovery--mostly a personal account of my recovery, but with hopefully some ideas that could be helpful to others on the journey. And I've had a bunch of little nudges lately to put it out there. So here goes.

I’m excited--and nervous--to finally be going ahead with this series I’ve been planning and working on for years. I’ve probably waited too long, but I never felt ready to put it out there. I still don’t feel ready to be honest, but I am learning to fight the perfectionist tendency that has me waiting until I have every wandering duck neatly in a row.

Let me just say from the outset that I absolutely acknowledge that the recovery process is unique to every individual. Still, I’m convinced that someone struggling with illness or watching a loved one struggle can be encouraged and informed by hearing about what worked for someone else. I know such stories from others encouraged me.

I also hope to take some of the fear of the unknown out of the idea of recovery. I remember when I was at my worst point, contemplating therapy and the kind of work it was going to take to recover, and I felt more overwhelmed than I’d ever felt in my life. The task, viewed from the bottom, seems insurmountable. Just remember, you only have to take one step at a time….

Which is how I’ll be taking this series. Until next time,

J.

Look How God Has Answered

Our Answer from God slipped into our arms after a long wait, as gently and quietly as the thaw of ice this spring. Our Answer, our spring Promise baby, spring after the long winter of our waiting.

“It is good to wait quietly for God…” (Lamentations 3:26)

Only You Lord, and only in a book called Lamentations, would put the words “good” and “wait” together. Humans don’t tend to think of waiting in terms of “good.”

There was first the wait for healing, as my brain and our family and our marriage first rested and then grew strong again. Then the silent pain of unexplained years of infertility. Finally the expectant wait of gestation, with its joy and its impatience. Then two weeks of false labor. If waiting is good, then we have had our fill of good!

But when our Answer came, she came in a great gush of power and joy. Barely two and a half hours of intense contractions, ten or so minutes of willing my body to hold the baby a little longer and not to push in the car on the way to the hospital, and maybe two minutes of pushing while Daddy’s sure hands guided, and she was in Daddy’s arms and then mine, her warm slippery body finally pressed up close to my heart.

And then.... Look, look, look. Look at those wet, cupid’s bow lips. Look at those slate-grey eyes. Look at that perfect nose. Look at that copper hair. Look, look at how one ear is just a bit different than the other, look how every fingernail is perfectly formed, look how her toes spread and her legs cross and her elbows dimple when they bend and her skin goes quickly from grey to pink and she sneezes and looks and looks and looks back at us. Look, look, look how God has answered!

“The world seems so different when you look at a baby,” says her aunt one day.

Indeed it does. Her lips, how they flicker with emotions that change like light on water. Each one slips away and the moments slip on too, the precious moments I will never have again with this little being that has inexplicably been entrusted to me. And after all the waiting, I just want time to stop and wait for me to catch up and catch on to what a wonder it is to be holding this fresh new being, this Answer straight from God.

New ships to port

It’s been a long time since I’ve updated this blog. A lot has changed, a lot is changing, and I have lots more to say.

For now, as a bit of a teaser I’ll just post a very short update on the J family. The winds of 2019 are bringing several new ships to our port. After years of waiting and hoping and praying, we now expect our second child to arrive any day now. As soon as she comes (yes, a couple ultrasounds have confirmed we are expecting another girl), we will be planning several trips to visit friends in Edmonton, SK and BC.

The reason for those trips is another long-time dream come true: we are raising support for Wycliffe Bible Translators. Ever since high school I have had a burning desire to be involved in Bible translation. I know what it is like to read the Bible in a language I know well, but isn’t my heart language. I know the difference it makes to hear it in my heart language, and I want everyone to be able to experience that. This is the desire that brought my husband and I together. This is what we trained for and have prayed for. OCD, anxiety and depression put the dream on hold for a time, but no more.

I am so, so grateful for the healing I’ve had. I’ve been planning a series on recovery for a long time, and now finally feel somewhat qualified to go ahead with it, so you can look forward to that, as well as probably to some posts about life in the waiting, as the last few years have been, and what it’s like to finally now be moving on…. And of course, baby.

Thanks so much for reading. Thanks for being part of my journey.

Love, J

Community

This one’s for you, Passion Play family! And companions from small group. And friends from Women Together. I know it’s a bit long. Stick around (or skip around) for a poem at the end!

Our small family is gearing up for another Passion Play summer. Two years ago, I convinced a somewhat reluctant gem to help me pack up a 2-year-old lily with all her paraphernalia, and all of ours, into a ramshackle old tent trailer so we could spend 9 weekends camping and volunteering as actors in the annual Canadian Badlands Passion Play. It was the fulfilling of a childhood dream of mine. I am excited to say that now two years later, gem, lily and I are embarking on our second summer of Passion Play.

I know that the first time we re-unite with Passion Play family members, there will be hugs and good-natured teasing about the things time does, and maybe some happy tears. And when we part there will be hugs and pain and sorrow tears. And in between will be prayer and learning and exchanging stories. We’ll have potlucks and campfires and late-night philosophical conversations over bread and wine. I won’t have time to maintain regrets or obsess over whether I made dinner safely or what invisible dangers went into my pocket along with my keys. Hugs and words and the love and acceptance of a human community will go a little further in convincing me of the steadfastness of divine love.

The first few weekends are often bitterly cold. The last few can be unbearably hot. There is always a rain- and thunderstorm or two or three somewhere in between, that threaten to wash away friends’ homes from tent city, swirl up black bentonite mud to cling to sandaled toes and heavy linen hems of our costume robes. In all probability, the threat of one of these summer storms will cancel a performance at the last minute. There will be mosquitoes and ticks and sunburn and sunstroke and heat rash. There will be dirt and animals and mud for lily to sit in and cover herself with and I’ll pick her up and then I’ll have to re-adjust the headpiece of my costume with those same hands, and the folds of the veil will blow over my mouth, and I might be obsessed with the thought that I mustn’t lick my lips and I might feel compelled to run to the bathroom at first break in rehearsal and wash my lips and chin until they crack from the water and friction and dry air. And I’ll get a front row seat to watch this most breathtaking story take its first breaths, and I’ll get to be part of the rhythm of that breath.

I’ve already decided that I’ll take the optional audition. It will be nerve-wracking. I’ll probably be awkward. I’ll hate that I wonder too much what the directors think of me and my emotive choices. My stomach will be in a pathetic ball when I check the casting list. I will feel jealousy. I’ll feel dissatisfaction and disappointment, because I’m not the actor I wish I could be, because I can’t do everything perfectly or even “good enough”. Rehearsals will be long and tedious and technical. Lily will get cranky and defiant and uncooperative, and make a fuss in the middle of rehearsal, and I might have to run off stage, face burning, to try to calm her outburst. I might have lines like the ones I choked on last year: “Crucify! Crucify him!” and worry that I said it a little too convincingly or maybe too entirely became the character that meant those words and maybe would be damned. But I won’t have time to be consumed by the worry, because I’ll be consumed instead by the driving force of my intention: to serve this story, and this Story-Giver.

Francis Chan talks about the goal of Christian marriage being to drive each other to the kind of life that leaves no time for arguing. There is no energy left for anger or bitterness; it is all spent toward the single goal: the kingdom of God on earth; pouring out our lives and hearts to hear the words, for our spouse to hear the words: well done, good and faithful servant.

Marriage is of course just a part of what life in Christian community is all about. Christian siblings are all called to love each other with the kind of sacred love that drives action. And when we all join together with a single goal--the glory of God--the results could be awesome. And in between, the love shared, the care and concern shown for one another, the communion and the soul-out-pouring prayer could very well be part of the miracle God will use to heal all our diseases.

With deep gratitude to fellow passion-players, here is a poem I wrote for my Passion Play family 2 summers ago:

Jesus is at the Passion Play

Jesus is at the Passion Play

You mean the man in blue.

Who is the man in blue? you ask

As we wait in the wings for our cue

To search for him, and find Someone Else-

The Painter, the Poet, the Reason, the Pulse.

The man is just a picture.

Who is this guy with loud morning hugs?

This man wakened to early prayer?

These starlets who forget themselves

This one, who wipes feet with her hair?

They’re pictures of Jesus, fair.

This man in his dark disguise-

Dark-white saint, serving the Story

He faces my fear, so I can see

There is more grace, even to me

A Jesus picture--drawing me free.

Who are these people, earthy and drab

Their veils shot through with glory

Who run into the house of mourning

And weep to tell the story?

Who give their life to seek for Life

Who care so much as to hold us dear

Brothers, sister, strangers, pictures

Of Jesus, in body, here.

Come and see, Behold the Man

Picture Life, and what Jesus could do.

The one in blue pictures Jesus the Man;

But all the others, in black and brown

Are pictures of Jesus too.

We’re painting a picture of Jesus

You with the brown, him with the blue;

All of us image-laden pieces,

And I so desperately need you

To paint that picture anew….

Fighting The Machine

Hello, friends! Thanks a million for stopping by again. I found these musings I wrote not quite a year ago. Reading over them, I see again how far I've come in the last few months, and I am grateful:

On a visit with my parents recently, it hit me with a mixture of astonishment and disappointment how much this disorder has changed me. I have become inflexible, easily thrown off by the unfamiliar; whereas change and newness used to thrill me. I miss my old self--my parents’ daughter. They say my lily reminds them of me: her exuberance for adventure, her joy in the out-of-doors, the way she loves to play in the mud! None of those parts of myself have survived the illness.

I’ve become stiff and proper, even stern--a perfect old matron. I, who Pan-like swore never to grow up. I, who feel underneath it all not a day over 16, but trapped, not so much in an older body but an old old mind--a mind knowing too much of fear, and not enough, snagged on its gears and circuits of anxiety and responsibility: circuits that never end or slow down.

Learning new pathways, ways to get off or short-circuit the typical thought patterns, is a slow and awkward re-wiring. The fear-gears on the other hand snapped so easily into place, as if pre-fitted to my brain. Or was it my brain that was pre-fitted to them? What tripped the wire for the waiting blazes of terror? What were the triggers, where are the buttons, and how can I prevent them from being pressed?

Circuits, gears, levers, buttons; machinery--it’s a cold, ugly metaphor for the human brain. But sometimes I do feel so cold. Frozen, paralyzed by the overwhelm of decision-making.

It doesn’t seem fair. Of course it isn’t, to be so prone to these vicious cycles of worry, this clogged-gear paralysis, but “it is what it is” as my psychologist says. The reality I must learn to live within. I pray for the grace to learn well. Yes, grace. God’s grace--more than sufficient to compensate for any “unfairness”. Ah! The grace of God’s unfairness! My only hope after all: that God would not treat this sinner fairly.

The Power of Story

Whatever I may think of my own talents as a writer, I am a storyteller and so are you. And the stories we tell have incredible power over us. I’m thinking specifically of the stories we tell ourselves about ourselves, inside our heads. The importance we ascribe to the various parts of these stories can change the direction of the rest of our life stories.

Selective Story-Telling:

As an example, consider the story I told about the day I drank the orange juice and made a terrible vow (link here). I did not include (and I neglected to include every time I told it to myself, which I did hundreds of times) that earlier that day I’d dined at a restaurant and avoided the pretty little complimentary appies with deli meats, because I was pregnant. At this high-class restaurant in a tourist resort, I had insisted on bottled water, for the sake of the baby. That morning, I had washed my fruit in a bleach solution, then thoroughly rinsed it, because that was ‘best practice’ for this part of the world. I had gone for a run on the beach with my best friend, and stifled my competitive spirit to let her go on without me at the 5-K mark, because I didn’t want to overdo it for the sake of the baby. Every night that visit, my friend and I had sung “Jesus Loves Me” to my baby, at my request, because I had read that she had recently developed tiny ear buds. I left out those parts of the story, every single time.

Over and over I told myself stories of my own incompetence, stupidity and negligence. I told myself stories in which I could never be forgiven. I told myself dark stories with terrible endings that ought to serve as lessons to much better mothers.

I told myself such stories until I no longer trusted myself. What reputation could possibly survive such a harshly selective story-teller? I stopped believing my memory and even my spatial perception.

A New Narrator

It took a while, but I have changed the way I tell myself stories. My new stories are about the same person and the same events, but I have fired my old narrator! My new inner-narrator is much kinder; she tells me stories about a “good enough” mom who is competent in most situations, and knows how and when to ask for help. Her memory, intellect and intuition are reliable, and have never yet led her too far wrong. She makes mistakes, and falls, and is strong enough to get back up again. She lives by grace and serves as an example for others who fall and fear the endings of their own dark stories.

My new narrator compares motherhood to astrophysics or rocket science, and has me saying it with pride: “I’m a mom! It’s no big deal. I’m really good at it.”

This new narrator tells and re-tells the moments of joy and peace and victory, the times when lily and I enjoy each other, the snuggles and kisses and “I love you’s” and games on the floor and laughing runs in the fields. This narrator remembers best the times lily’s accomplishments blow my mind and I allow myself to admit that I had a part in that. And the times lily's defiance and disobedience blow my mind but I keep my temper and deal with the situation in a constructive, thoughtful way.

My narrator insists that, despite all kinds of failings and moments of seemingly total disaster, I am a good enough mom, and that is great.

So what stories are you telling yourself? What are you leaving out? Is it time to start learning to be a kinder narrator?