What Map Do You Use?

We watch a lot of Dora the Explorer in this house.  My girls are permitted 30 minutes of Tube Time daily, for their entertainment and my sanity.  Dora’s usually Sara’s selection, and since she’s the oldest, she usually gets first choice, although the older (and louder and more opinionated, if that’s even possible) that my littlest gets the more likely we’ll be watching Go Diego Go more often.

Within the first few minutes of Dora, for you unlucky folks who’ve never had the privilege of meeting her, she sets off on an exciting adventure to a fantastic destination (like a fairy-tale castle or a treehouse party) and realizes she’s lost.

“Who do we ask when we don’t know which way to go?” says Dora.

(Jesus, I usually say out loud, but of course that’s not what my girls say).


And out comes this rolled-up scroll of a happy map, singing it’s happy “I’m the map” song (do you have it in your head yet?).  And this happy map navigates for them the very adventurous, dangerous-but-only-in-a-toddler-friendly-way path to their destination.

Oh, if it were only so easy.

Seems to me that we are all on our own personal quest to some unknown destination, and that happy little map in Dora?  He doesn’t usually show up on our radar.  Sometimes we don’t really (seem to) need a navigator; the little boat of our lives floats us along the tranquil waters of a great career, or an easy loving, or a circle of fabulous friends.  But at other times it’s like our little boat has been thrust into tumultuous waters and we really don’t know which way to go.

The first time I white-water rafted down the Nile (doesn’t that sound smashing?) proved one of the most thrilling rides of my life.  I had triple-thick blond Amazon Woman extension-braids in my hair, a dark Ugandan tan, and a ton of courage…before I saw the white water.  Um.  Do I have to get in that little rubber dingy???  But I did, with 8 other scared passengers, and we paid excessively close attention to the instructor and his instructions before we headed downstream.  Now, white-water rafting (which may be boring to kayakers but is a wild-ride for we-who-dare-only-in-our-imaginations) on the Nile is a mighty different thing than white-water rafting on a Canadian river, largely because a Canadian river is full of rocks (that’s why the water’s so bubbly) and freezing cold.  You don’t want to fall in.  They tell you not to fall in.  But on the Nile, the white-water comes from the incredible depth of the water and the convergence of rivers, and the water is balmy and full of alligators.  Supposedly.

And the first rapid we came to, our guide said, “So, do you want to stay in the boat or fall out?”

What?  My boat of chickens voted to stay in the boat.  Which the guide honored.  The first time.

The second time, we thought the guide had listened to us when we said we wanted to stay in the boat.  He told us to paddle left.  Paddle hard!  And we did!  But those bubbly, churning, frothing waves just kept coming closer!  And suddenly our boat was vertical on the horizontal and we were flung into that mass of water.

It was like being in a washing machine.  I did not appreciate my extensions at that particular moment.

Later when we climbed into the boat, we actually thanked our guide.  It was terrifying…but enormously fun!  When it was over, that is.

Navigation of this life sometimes feels like that…like the guide knows where we’re going, and has instructed us for various situations, but we are headed in blind and don’t appreciate the ride until it’s over.

So often when we’re charting these waters we feel alone.  We know so few who have rare diseases or conditions!  Did you know that a rare disease is typically classified as one that affects less than 1 in 2000?  That means that a rare disease affects 18,000 or fewer in Canada.  Cystinosis affects approximately 50 people in Canada.  Talk about a lonely boat!  And I live in this lonely boat as a parent of a child with cystinosis, and not as a person with cystinosis myself.

There are a lot of things that make living with a rare disease/condition difficult, frustrating, frightening, and lonely, don’t get me wrong.  We struggle with questions that parents shouldn’t have to struggle with:

How will our daughter cope with foul-tasting medications?
How long will she have muscle strength?
Will she ever be able to have biological children?
Will she feel nauseated for most of her life?
How will she cope with “being different”?  Even when others don’t know she is?
Who, when so few are affected, will contribute to the research for better treatment and, dear God, please, a cure?

And others that I can’t even bring myself to write.

Eight months ago, when we boarded this lonely boat, our Guide seemed oddly silent, not giving us “fair” warning when we were tossed into the waves of heartache, disappointment, fear, and aloneness.  And yet, we had been prepared.  Words of encouragement, guidance and instruction permeate our Map.  Things like

“Be strong and of good courage, for the Lord your God is with you wherever you go.” (Joshua 1:9)

“Be strong and take heart, and wait for the Lord.” (Psalm 27:14).

“…we also glory in our sufferings, because we know that suffering produces character; and character, hope” (Romans 5:4)

“In this world you will have trouble.  But take heart!  I have overcome the world!” (John 16:33)

Such words glimmer like little stars on the pages of Scripture.  Verses that speak of hope inside of despair, love destroying fear, life breaking free from death.  We have a Navigator.  He left us a Map.

It is so easy to forget.


Don’t kiss that frog!

my dearest little Sara,

well, it has finally happened.  the chase has begun; the giggles and long blond hair must’ve got him.  i must confess, when i saw him put his arms around you and lean in for the kiss, i was mighty proud when you shook him off and raced away.  i wouldn’t need to sic daddy on him after all.  you didn’t even look back to see if he was following you!  atta girl.

it may have been a dinosaur’s age ago, but i remember those playground chases.  all the girls, racing after one boy.  one boy, racing after all the girls.  i remember one recess when i was in the first grade, and we had cornered one boy under the play structure and tied him up (with what?  details.  can’t remember that far.).  all the girls took turns giving him a kiss on the cheek – except me.  i was far too shy and scared that my glasses would scratch him or some such.

he was my very first boyfriend (and the last for a very long time).  ah, dear dennis b..  i guess he preferred to be the chaser rather than the chase-ee.

oh, my little honey girl, do not chase those boys you want.  let them chase you.  and do not let just any boy catch you, baby.  be a butterfly and choose your catcher with care.

you’ve taken to loving fairytales recently, and the other day when we read “the princess and the frog” i found myself cringing at the lesson you were learning from this pretty princess and her toady friend.  in the fairytale of the “princess and the frog”, the frog retrieves the princess’s golden ball in exchange for 3 meals from her plate and 3 nights in her bed, after which he turns into a royal prince who had been cursed with an ugly appearance.  oh, how expensive that favour!  that frog certainly got what he wanted from the exchange.  i do understand that the morals of the story (at least, our version) are to keep your word, and to look beyond appearances, and i can appreciate both of those – do keep your word and do keep in mind that a person’s exterior is not necessarily a reflection of the heart.


do not kiss frogs.

kiss princes.

we girls tend to believe that our kisses and love can transform the ugliest of suitors.  we look beyond the things that really matter:

  • how he treats his mother
  • the jokes he tells
  • his attitude toward people who are different
  • the way he looks at and treats other women

and plenty of other very important things, and we give ourselves away.  not just our bodies.  our thoughts, our desires and hopes, our hearts.  and we still believe that we can somehow transform that ugly, ugly frog into the prince we desperately want.


frogs do not transform with kisses.  at least, not permanently.  if that frog you fancy morphs into some charming fellow with your kiss, you can trust that eventually he will probably morph back into his most comfortable form.  ribbit.

but kiss a prince, now – if you kiss a prince, he will stay a prince.  he wasn’t a prince to impress you, to win your favour, to get his pleasure.  he was a prince because it was in his nature, his character, and his choices.  and if eventually you do not want his kisses, or he does not want yours, he will still be a prince, and you can bid each other adieu with hope and thankfulness, self-respect and respect for him still in your heart.

my darling girl.  your heart is a jewel beyond price.  you carry the treasures of your laughter, your ideas, your intelligence, your character – gifts to yourselves, gifts to others, gifts to the King of Heaven, and perhaps someday gifts to a prince.  be discriminatory.  guard the mystery of you while you allow the chase.  trust the wisdom of your Father and your daddy before you give away your kisses.

and kiss only a prince.

i will be forever grateful that i did, and forever hopeful that your prince will be as wonderful as mine.

love, mommy





Things I learned this Christmas

Several years ago while I was teaching Canadian History (not nearly as dull as you might think!), I had a lesson plan that included the “Huron Carol” (which you can read here or listen to here (in Wendat, French and English – English starting at 2:13, I think).  It was written by Jesuit Priest Father Brebeuf for the Huron people, for whom he later died, and it retells the story of Christ’s birth as the Huron (who knew themselves as the Wendat) might have understood it.  I put the lyrics on an overhead for my students to read as they listened, and then asked if anyone could connect the Huron story to the Christian/Biblical account (for instance, “log of broken bark” would be the stable; hunters would be the shepherds, etc).  The student who retold it started with the virgin birth, and another student gaped and said, “You mean, people believe a virgin had a baby???”  That student’s amazement at the story of Mary and Joseph and Jesus really struck me, especially since, having heard it all my life, I often don’t see the incredibleness of Christ’s birth.

Many writers and directors have created films that retell the nativity story, but none have been as powerful or well-done as Tony Jordan’s The Nativity produced by the BBC in 2010.  It stays in detail pretty much to the biblical account, but includes some of the emotions that would have taken place in the in-betweens not talked of in the Bible – of Mary’s doubting (hard for her to doubt, eventually, as her burgeoning belly proves it’s true), of Joseph’s total betrayal, of the despair of Mary’s parents at their unmarried daughter’s pregnancy, of the rejection by family and probable loss of status and respect for Joseph, of his questions even after his dream.  In fact, the majority of the story dwells not in the miraculous but in the earthly heartache that would have been experienced by all involved.  Mary’s doubting turns to faith – but that faith still faces fear and rejection and loss and loneliness.  It is a profoundly human and beautiful rendering of the story and one I still contemplate.

Two things in particular have stood with me over these Christmas weeks and past.  The first is that that first Christmas was not necessarily lovely, serene, or joyful; that our Christmas full of joy and hope and beauty stems from the humbleness of Christ’s birth and all of the fear and despair (and hope and faith) spreading from it.  I know many people who face Christmas with tremendous grief, who see the lights and trees and hear the sentimental music and don’t live in the joy that others celebrate – and in that, feel very alone.  And I have really been struck by the fact that we are not alone, much though we may feel it – that we have a God who understands from the beginning our feelings of sadness, loss, and fear, and that the Bible is full of such stories – stories where often the human emotions aren’t expressed but were most certainly felt.

The second is that God is indeed sovereign.  I have been following, with much heartache, a family story of unimaginable trauma that started just before Christmas and still has no answers.  And in this story, I have been tremendously humbled.  I have not made it secret that my faith has foundered in these trying times of Aliyah’s diagnosis and the months since; in raw honesty I have found comfort and some hope.  But this family who is now suffering have demonstrated to me what true faith is and what true hope is.  Such a hope as they have shown, even in the unknowing, is deep, inspiring, eternal.  Sara and I pray often for the little girl in this family, and one of the things we talk about is how sometimes God’s workings don’t feel good in the moment, but He has a plan, He is being glorified, and He is still good.  I’m ashamed to admit that while I’ve taught this verbally to Sara, I have not necessarily lived it in my own thoughts, prayers, and life.

I still remember, in the hospital, those first few days and weeks after Aliyah’s diagnosis.  In spite of everything, I had a deep and abiding understanding that God had allowed this and that it would be worked for good – beautiful good – in Aliyah’s life and indeed in our whole family’s life.  And even when I questioned and doubted and feared, I had a strange gut feeling, deep down, that God was and is working something for good.  Even when I imagine the hard times ahead, I know (and I can’t explain how) that this is a part of God’s story in Aliyah and in us, and in that knowing there is a hope that I have allowed to lay dormant.  Well, no more.

I choose now to live in hope.  To walk in the hope of Aliyah’s joyful life, of Sara’s compassion, and especially of God’s plan.  Of his great and glorious plan – a plan that is to redeem and renew and refresh, that has love and eternity in mind, that carries the greatest hope we could ever imagine.  To remember that faith does not mean never doubting, fearing or suffering, but means facing doubt and fear and suffering through the eyes of hope and eternity.

That is, after all, the beauty of the nativity.  A hard now for a glorious eternity, faith in the face of doubt and fear, and a God who knows it all, loves it all,
and never stops working.

Helping Hands – Top “ten” ways to help someone with an extended hospital stay

Very recently, I learned of a family currently facing trauma, the kind of trauma that involves an extended hospital stay followed by a period of convalescence (hopefully at home).  They are part of an incredible church family, one that has surrounded them in ways that are deeply supportive and faithful, and have been a real testament to what the family of God should look like.

My sister-in-law and I started brainstorming ways that people could help.  I have friends who intuitively know the needs of people with crisis situations like illness or accidents (and even awesome situations like bringing a new baby home), and immediately jump to fulfill them.  I would imagine many of you, like me, hear of these kinds of things and feel helpless.  Well, you’re not!  I give you…drumroll, please…the Top Ten (okay, nine…well, eight, really) helpful tools for those with such a crisis. Most, if not all, of these ideas were done unto us.  You would be amazed at the ways you can bless people who need it!

During and/or after hospital stay:

    1. Meals.  This is the number one offer of help that we were given, and it was an incredible blessing.  We received meals while at the hospital (thank goodness – food’s expensive there and not so healthy) and after.  Here are a few tips:
      • Go disposable.  If you can help it, try not to use dishes they will have to return or they will have stacks of them and not know where they go.
      • Ingredients list and a recipe!  This is helpful for allergies, and for those dishes that are extra special hits.
      • Directions.  Don’t forget to let them know how to heat it.
      • Include the date of preparation.  They may come across a frozen meal several weeks (or months) later and not know how old it is!
      • * If you are the person with the key to their house, perhaps do a little freezer organization (mine needed it!) so it’s easy to access the meals.
      • Hot meals: set a date and time when you plan to bring it.  Give enough notice that they haven’t got something ready already.
      • If you don’t have time (or don’t like/can’t cook), give a gift card to restaurants that are close by hospital or home.  Take-out pizza or Chinese can be great on the really overwhelming days.
    2. Snacks.
      Extended hospital stays get expensive.  Bring muffins for breakfast (frozen or not, make sure they’re labelled), or a loaf of bread with jam and butter, some fruit (not too much; it goes bad when forgotten), granola bars, a small tray of fresh veggies, etc.  A travel mug, some tea bags and some sugar cubes are helpful too.
    3. Encouragement at the hospital and after.  This can be in the form of cards, notes, messages on the phone or facebook or email.  We were so touched by all the encouragement we had; it helped us through the harder times to know so many people cared and were praying for us and our family.
    4. Parking.  If you know that the stay will be extended, consider purchasing for them a one-week parking pass at the hospital.  Make sure you aren’t doubling up with someone else, though; if you can ask them if they need it, try that.  And if they don’t want to accept your money, ignore them.  When you are in the hospital, accepting help is very humbling and you don’t necessarily realize how much of a help it is.
    5. “Love Offerings.”  There were some small but very thoughtful gifts that came to the hospital for us.  People gave or lent books or activities like sudoku or word searches (which was nice once the crisis was past), colouring and activity books for older siblings who stick around the hospital a lot, travel shampoo, a newspaper or magazine, things like that.
    6. Yard work.  Easiest, probably, because no arrangements need to be made.  Just show up, bring your own lawn mower, trimmer, shears, gloves (or shovel, if it’s winter) and clean up the yard so it doesn’t seem like another thing to do.  (My wonderful mom redid my whole garden – but I wouldn’t recommend that unless you know them well).
    7. House workIf it is possible to clean house for them, consider bringing your own supplies.  Ask if they use chemicals or chemical free/home made stuff (they may have their own, if they do).  A wonderful friend of mine made some home made cleaners for me – she remembered a conversation we’d had about that once!
    8. Child care, if applicable.  Including pick up and drop-off, if you are able (or switch vehicles if they have car seats).  (Have I mentioned my amazing family and friends?).
    9. Laundry.  A thoughtful offer – but probably not one that will be accepted.  It is…ahem, embarrassing…to have someone go through your skivvies.
    10. A listening ear.  Often when someone you love (like your child) is ill, everyone asks about how your child is, and not about how you are.   I was so grateful for friends who listened to me cry and rant and worry.   I was equally grateful for friends who took me out and talked about the things in their day to take my mind off of my own heartaches.  Not that I remember much of the conversation…but it was nice sometimes to shut off and not talk about things.

If you are one of those who chooses to do something like this for someone, try not to be offended if you don’t get thanked.  Those you help have so much on their mind, they may forget a few people.  Go anonymous, if you like.  But don’t feel you have to – I loved thanking people for their help, letting them know how grateful I was.  If you happen to be organizing any of these things and can get people’s names and addies, and maybe write a little list, that’d be great – so when the person gets down to thank-yous the information is readily available.

Have you ever experienced this kind of help?  How did people you care about help you when you were in need of it?

Finding those rose-coloured glasses

Enjoy every moment of these years.  They pass far too quickly.

The wise words of a far older woman (grandmother, probably great-grandmother) to me as I packed up my (chattering, bickering, whining) children, slung heavy diaper bag over my shoulder, and attempted to shoulder open the door on my way out.  I gritted my teeth, smiled, nodded.

I remember those exact words given to me years ago, during my carefree university years.  I had been lamenting various essays and exams coming in that busy, cold month of November, and my dad said, “These are the easiest years of your life.  You’ll never have such carefree years again.”  And, once again, I gritted my teeth, smiled, nodded (and probably said something rude because, after all, he was my dad and not some lovely old grandmother).  But I knew better.  I knew that these university years were far too stressful and overwhelming to be compared to the freedom of having a job and a paycheque and all that free time

Now when I flip through my university photo albums, my heart sighs with lovely memories.  Memories of dancing under an enormous tree with my roommates, singing “Someday my Prince will Come” under the starry skies.  Of spreading homework across a picnic table on an autumn-warm afternoon.  Of brisk mornings racing to the bus, my backpack bouncing on my back and my breath puffing out in front of me.  Of dear friendships, first loves, deep philosophical conversations, midnight Sev (Seven Eleven) runs for slurpees in the dead of Winnipeg winter; pool tournaments lasting into the wee smas, camp retreats and jamming with the worship band, Purple City (those of you who know must just wink wink and keep the secret) and football games.  And yes, memories of hours of schoolwork – sitting by my window, chin in my hand, as I composed an essay on Cinderella or tried to figure out syntax errors or analyze statistics.

But, as you will note, most of those memories do not involve tons of stress.  And not because it didn’t exist but because, in the grand scheme of things, all of the joys and hopes and giggles of that life triumph over the hyperventilation over exams and caffeine-induced stupors when pulling all-nighters to get a paper done that I should have completed days before.

Funny how those rose-coloured glasses are nowhere to be found in the now moments of life.  Such pressing things take a toll on us: children begging to be picked up while we cook dinner, or stubbornly refusing to put on their shoes in a rush to get out the door, or very vehemently and vocally disobeying instructions not to beat on their sisters.  Laundry hampers heaped to overflowing with dirty clothes, windows streaked with little fingerprints, fridges that are desperate to be cleaned, and a floor with crumbs as numerous as the stars.  Constant repetition of the word “NO!” from both mommy and child.

Nightly I flop, exhausted, onto the couch, look at my husband, and realize that the only thing I want to do is close my eyes, listen to the silence and dream of days to come, when my children are more independent and less whiny.

Oh, but when I think of those other moments…

  • arms squeezing my neck so tightly I can hardly breath
  • cuddles in bed
  • singing songs with two high small-child voices joining in
  • funny imaginative stories invented by preschoolers
  • remarkable inside-jokes presented by a toddler

I know in the harder moments of life that yes, my dad was certainly right – those university years were indeed among the most carefree of my life.

And I know, too, that that little old grandmother was right, too.  Someday I will look back and desperately miss these years.  So I’m going to hold on to each moment – in case I blink and suddenly my girls are all grown up and I’m missing the arms around my knees, the happy giggles, and even the banging of spoons on metals bowls amid shrieks of laughter – yes, even that.

Between light and shade

The other day I picked up the mail to find my third unrequested “Readers Digest” (I’ve “unsubscribed” from my non-subscription three times already).  Although I don’t plan to pay for the magazine, I glanced at the cover as I aimed it for the trash bin, an odd title caught my eye: “In Praise of Sadness.”

Besides the obvious irony of the title, it snagged my gaze because it’s been a concept I’ve thought of (irregularly) over the last decade or so, and more frequently in recent months.  I hadn’t meant to dwell on grief after my last post, but this particular topic merits an address.

The author of “In Praise of Sadness,” Hugh Mackay, advocates for sadness.  Not choosing it for ourselves, that is, but fully experiencing it and recognizing the worth of times of grief in our personal growth.  He goes so far as to say that when we fail to fully address our sadness, we become more anxious, stressed out, powerless, and insecure.  But I’m getting ahead of myself.

Several years ago, on one of my “big” birthdays, my hubby took me on a spiritual retreat (I was like, “Great, no music, no party, no friends, happy birthday” – but it ended up being a fairly pivotal and beautiful weekend for me during a disheartening and disappointing time in my life).  In their library – a beautiful, dark, curl-up-on-the-couch-in-front-of-the-fireplace library lined with a vast array of delicious books – I kind of fell upon a little book called “The Lost Virtue of Happiness” (JP Moreland) and the first few pages really challenged my thinking.  Moreland presented the discrepency between our current definition of happiness and the classical understanding of happiness.

According to the Mirriam-Webster dictionary, happiness is

1. good fortune,

2. a state of well-being and contentment and

3. a pleasurable or satisfying experience.

Moreland likened our current definition of happiness to the excitement and exhileration of a sports game or a party, the kind of emotion that swells, crests, and disappears.  Then we jump from happy experience to happy experience, never satisfied, and glum or depressed in between times.  This resembles a lot of my spiritual life as a teenager and young adult – seeking “mountaintop” experiences with God and believing, when I was in the valleys, that I must not be where he wanted me to be.

The classical definition, at least the one coming from Aristotle, teaches that happiness was our ideal goal in life, but happiness was not this kind of sensory, experience-based emotional state.  Rather, eudaimonia more closely resembles our idea of the word wholeness, which is about living “in accordance with reason; fulfilling our sense of purpose; doing our civic duty; living virtuously; being fully engaged with the world; and especially, experiencing the richness of human love and friendship” (Mackay).

Moreland compares this state of being to dinner music in a restaurant.  While you eat, regardless of your company or conversation (stressful, loving, romantic, friendly, intimate, conflicted, etc), the music in the background is comforting, peaceful, and steady.  Aristotle defined happiness as “an activity of the soul in accordance with virtue” – connecting the difficult choices to follow virtue rather than vice to this kind of happiness or wholeness, and that this state of happiness is a totality of our lives rather than just found in the moments of delight.

This kind of wholeness does not exclude sadness or times of despair, which are just as genuine and meaningful as our joy.  In fact, times of grief and sadness often develop in us the ability to live courageously, compassionately, even nobly.  Most of us, when we look back over our experiences, can see that the valleys we have faced have often led to deeper understanding of God, of ourselves, of the world around us; and that those experiences have, indeed, been some of the greatest teachers in our lives.  Turns out the apostles of the Bible knew a thing or two here, as well: “…we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope” (Romans 3:3-4)

So, after all that, I have to think of my children.  I do wish I could choose the sorrows they will face – and indeed wouldn’t choose some of the sorrows that they will face – but that is beside the point.  My deepest wish for them is not that they are happy as our world sees it, but rather that they find wholeness by plumbing the depths of all their experiences – those joyful and those sorrow-giving – that they make the choice to do what is right by God and humanity regardless of the cost; that they allow themselves to hurt when they need to and celebrate when life calls it out of them.  I pray that I can teach them that sadness is not the enemy, but an instructor of perseverance, character and hope; and that true, pure, and boundless joy can be found in those dark valleys too.


“One swallow does not make a summer, neither does one fine day; similarly one day or brief time of happiness does not make a person entirely happy.
“The richness of life lies in the interplay between light and shade.”
Hugh Mackay

Grief: Not for the Faint of Heart

Warning: a little bit of raw honesty bleeds into these “pages.”  I believe I have not crossed the line of being too personal – and there are definitely thoughts, ideas, the specific sources of heartache, that belong between me and God, or between me and those closest to me.  Those things I shall not share.  But I know I am not the only one who has ever grieved, and I daresay I hope there is something small in here to encourage someone else who is also aching. As Jean Vanier (I quote him later) says, “I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes.”  May it really be so.


For three things in my life have I grieved.

For something precious lost.
For something deeply desired denied.
For something painful given.

And in each case, the grief is profound, shattering, and, oddly, empowering.  Cyclically.  I don’t at the moment feel empowered.

When I took Aliyah to the hospital with the flu recently, expecting to be admitted for the night (and, thankfully, being released with her positive electrolyte results), I recognized all of the nurses I saw on the unit.  And to my surprise, they recognized me.  One of them said, “You were the couple that were so independent and coped with everything so well.”

Hah!  I thought.  Clearly, she did not see my red eyes every time she came into the room, hear the thickness of tears in my voice when I asked questions or clarifications, recognize the utter weariness that burdened my heart and my body.  Clearly she did not recognize grief.  Or so I thought.

I think back on those weeks in the hospital with both heaviness and hope.  I remember feeling overwhelmingly thankful – for the hospital, for the incredible staff, for the family and friend and church support we received, and for the very blessed fact that I believed in hope and that all things could be redeemed.   But also, well do I remember the unknown and unnamed fears that beat down my thoughts and dominated my dreams.  Well do I remember the dread with which I approached the computer and the barriers that prevented me from reading anything about what was to come, knowing I was not ready to bear it.  Well do I remember nights alone on that window seat where I slept next to my baby, attempting not to give in completely to the earth-shattering heart-wail that threatened.

Grief can be surprising in its approach.  Just when you feel you are coping effectively and you have it all under control, someone says something.  Or pats you on the shoulder.  Or looks you in the eye.  And then that tentative control shatters, and it feels like every cell in your body is going to shatter into a million broken, aching pieces.  So you can either dam it up, plug it up, swallow it, deny it, put it aside for another day – or you can take a moment (because sometimes a moment is all you can bear) and stare in the face of all that you (or as in our case, the ones dearest to us) have lost, and scream.

Figuratively or literally, take your pick.  I prefer the latter.

Back to the hospital nurses.  Their comment about how we coped revealed to me another facet of grief: that truly, to grieve is not a weakness, but a strength.   That coping does not mean not grieving.  Sometimes putting aside grief in order to survive effectively, to make it through changes, is necessary, but at some point it becomes equally necessary to really look at the reality of our pain.  Sometimes we can only do this, once again, in moments and tiny bits, because the entire picture is too big for us to face at one time.  But those tiny moments of weeping, of intense reality, are part of giving us wisdom, endurance, and understanding.

If I look back on past heartaches and remember the grieving, I recognize a few things.  A) Nothing has ever broken my heart like watching my child hurt.  I could never have imagined this kind of sorrow.  B) The grieving process for anyone and any pain –  the aloneness, the fear, the physical-ness of pain – although perhaps varying in intensity (but never in validity) is the same.

Jean Vanier, a Canadian humanitarian who lived out his deep Catholic faith, wrote often and beautifully about loneliness and aloneness, and I’m finding (in my lucid moments) that it applies profoundly to my own grief.  I can’t remember the exact quote, and so will paraphrase, in a far less poetic way than he.  In his book Becoming Human, Vanier discusses loneliness as essential to the human experience; when we recognize that indeed, no one shares or feels our pain and we truly are alone in it, we can recognize that all people feel the same loneliness – and this aloneness that we share, we can understand.  This has been a revelation in my life.  I can see now that no one can fully grasp what I am going through – and just as truly, I cannot fully grasp what others are going through.  But that does not mean we do not know or cannot share the grief of another, or that someone cannot share in our own.

I suspect some of you have expected me to share about how my faith in God has encouraged or sustained me in this time.  After all, I have been a Christian for over 2 decades and have many times felt that I walked closely with God.  But – and here’s the brutal, honest truth – my faith has taken a significant beating these last months.  I am limping along spiritually, weakly attempting to understand this God whom I have loved and his ways with which I have not yet come to grips.  My questions are far, far bigger than any answers that I previously would have spouted off (unfortunately, have spouted off), and far more numerous than the answers I did have.  Platitudes and empty promises mean very little in the reality of pain.

I can say this: I have hope.  I have hope that God, in his grace, will meet me somewhere along this dark road.  That the intense joy and beauty of life will outweigh the burdens and pain.  That somewhere in this heartache there is a healing more intense and more beautiful than mere physical healing.

Even if I have not yet encountered any of these things.  Or rather, even if my eyes have not yet recognized that which I have encountered.

We are in the beginning of this process.  It has only been a little over four months since our reality shifted under us and we have so much to learn.  I know tears are not finished yet, and probably there will be more moments when none of this “good stuff” registers.  But I have to be okay with that because it is our life.  It is my little girl’s life.  And God is not finished with us yet.

Psalm 42:7 Deep calls to deep in the roar of your waterfalls; all your waves and breakers have washed over me."

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