Tilting Earth

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IMG_7470They call it the cold smoke.  The snow so fine it floats on the currents of air, swirling, aloft.  The drive down Bridger this morning was more treacherous than it seemed it should have been.  The plows were not yet out and the cars in front of me were invisible in the swirl of the snow, only intermittent glimpses of brake lights.  Despite being sick, I was drawn out into the morning’s weak light for some quiet hours to try to put into words the last month.  Of course the thought of a scone and breakfast sandwich at Wild Crumb was a pretty strong draw as well.

So here I sit with a cup of coffee and a huckleberry scone with the perfect crisp sugary outside and delightful taste of summer inside.  The truth is I am still surprised to be here.  When I tucked Solveig into bed on Saturday night, January 21st, I told her I hoped I would be back in a week and a half.  But I told her I didn’t know.  I really didn’t know.  Sometimes Seattle feels like quicksand, you can so quickly become entrapped, unable to struggle free.  For the sixteenth time they would plunge the needle into her bone, in that purple dent on her right lower back, looking again for those cells that never cease to threaten.  Her hematocrit had been dropping, down around 34, the lowest I had ever seen since prior to transplant.  I feared relapse.  But you know, it wasn’t just an unsettlingly low hematocrit, it was God, He was preparing me and I didn’t like it.  On more than one occasion I wanted to tell Him to knock it off; He was freaking me out.

Only a week and half from today, it will have been a year since that day that is branded into my heart.  On that snowy Wednesday nearly a year ago we received word from Dr. Gardner in Seattle that the lump in Allistaire’s back was indeed leukemia cells and that we needed to get to Seattle as quickly as possible.  With face swollen from inexpressible sorrow and tears, I tried to answer my sister-in-law Jess.  She asked how long we would be gone.  “Six months, a year, I don’t know.”  In that moment I could never have imagined the ragged path that would stretch out into the year ahead of us.  I knew that in the best case scenario it would be six months, but I knew enough to know that plenty of terror could truncate that time into mere months or stretch it out into the realm of years.  And so in some strange way, as the world tilts again to February, to the time when one begins to weary of snow and cold, and yearn for the breaking of winter into spring, I found  my life repeating in strangely eerie ways.

Everywhere white.  Snow boots everyday and the time-lapse between icy breath in the car to the blasting of heat.  We meet at the end of the driveway at 5:15am and don our headlamps as we head up the side of the Bridger foothills, to that great white “M” fashioned on the face of the mountain.  My friend, Hope, and I head out into the dark to fight back the weight that seeks to settle on our surfaces and to be in the presence of the dark land and to be in one another’s presence.  We did the same a year ago.  We had barely begun our pattern of exertion when I was swept away with Allistaire.  We had barely begun to pick up where we left off when it was time again to head west to Seattle, uncertain of my return.  On those hikes up the hill a year ago, I told Hope about how God seemed to be preparing my heart for the realization of my greatest fear.  In His mercy He allowed me to sense the swallowing, suffocating darkness of possible relapse and told me in the clearest of ways, that repeated refrain, that He was there, in the darkness.  Come what may, He would be with me.  He would never leave me or forsake me.  And more – He audaciously promised to turn darkness into light.  I repeated His words to Hope on those dark mornings with head bent down, watching only the circle of light in front of my steps.  As so it was again, I recounted His grace to me, how He seemed so relentlessly at work in my heart those few weeks before we were to go back to Seattle.

How much of who we are could be better understood as a reaction to some unseen circumstance, some reality that seems questionable only because it dwells in the past but whose weight presses into us like a mold into clay.  As others encounter our surfaces, those forces that cut us, that exerted against our spirits, those days and moments and faces that softened and hardened us, are unseen.  We are often left to see one another only by what is readily visible.  And without exactly saying so, I have been asked why I rush to relapse.  Why do I sprint toward darkness and woe?  Brandon hit the floor, dead at 18, in the middle of brushing his teeth.  This tall, lanky tan kid who ran 20 miles before breakfast, passed from vitality to extinguished life in a breath of a moment.  As Sten and I disembarked the plane from our honeymoon, the gaunt face of his mom unexpectedly greeted us.  Matt was dead, killed in a car accident just days before.  I remembered standing next to Matt almost exactly a year before that, hearing that his friend Natalie, had been killed in a bus accident in Africa.  We could not have guessed that we would be hearing like news of Matt not long later.  These two were the first of an unwieldy number of lives lost too young.

As a kid growing up, I watched the wreck of relationships caused by grudges held to fiercely over the years.  Somewhere burrowed deep in me grew the resignation that I would do my best to never, ever let the sun go down on my anger.  I willed to never let division whittle its way into my heart, severing me from those I held dear. And as I faced the brevity of life, I willed to soak in life, to taste and see and hear and speak.  I determined to speak out loud what needed to be said, to tell those I love, that I love them now, never assuming there would be more time.  I began the habit of intense observation.  With eager forward bent, I sought to observe the light on trees, the silhouettes of swallows and bats at night, the sounds of voices, the details of ears and expressions.  I was determined to not miss what might soon be lost.  Any moment could be that last moment, the unexpected, seemingly trivial moment that could swell to significance were it be the last of something dear.  Some would call that morbid, but I saw it as becoming enriched, of taking into myself the beauty and delight of the life that is.  What if I had rushed passed those details, absurdly assuming they would always be there for the taking?  What if I didn’t speak and the opportunity was lost?  I so very much wanted, and want to live a life without regrets.  Perhaps too it is Thoreau’s fault, he who said he wanted to live deeply and suck out all the marrow of life, who when he came to die, did not want to discover he had not lived.  His words resound in me.

And then there was my deceit, my lying ways.  I was a liar of a child, a manipulator and even a petty thief.  After getting caught in 9th grade for stealing a sticker worth a mere dollar, I was shocked into considering the person I was becoming.  I was ironically on an Honor Society field trip to the Puyallup Fair and ridiculously decided to steal something I could easily afford to buy.  On that odd day, something turned inside me and I determined not to lie any more, to never steal again.  In the years that followed, my personal choice to be honest grew more weighty and filled out, such that I began to discover that I was strangely empowered when I had nothing to hide.  When I chose to walk through life exposed and vulnerable, I began to see that I need not fear people discovering something dark I was trying to hide.  I enjoyed the sense of lightness in my step when I was less burdened with the fear.  When I pulled my darkness into the light, it lost some of its power and what’s more, then it could be examined, explored and dealt with.  The thing about being honest and vulnerable though, is you are open to assault, you are unprotected, unshielded.  When the blade comes at you, it simply buries into your flesh, it is not deflected.  But here too, the Lord revealed to be a mystery beautiful.  He would heal me, He would bind me up.  He does not promise a life free from pain and hurt, free from the stinging pain of being wounded even by those you love, but He promises to carry me, to bind my wounds.  And He promises forgiveness when I am the one wounding, lacerating.

All of these mosaic bits of color and light and dark, bring me to this place of willing to look my greatest fear straight on.  I turn again and again to this darkness, this fear, this overwhelming mountain of doom that threatens to swallow my life, because I seek to wrestle.  I know too many dead kids and can imagine too easily those last moments, the last time to say goodnight or the last giddy run across the living room or grass, to pretend that relapse, and more significantly, the death that is so often tethered to it, is not utterly real and possible.  I suppose there is an element of wanting control, of not wanting to be knocked down in surprise when the board slams into my skull, or the knife again slips hot between my ribs.  I know rationally that I can never, ever be prepared sufficiently for such a blow.  Allistaire’s death would without a doubt knock the wind out of me.  I would surely find myself crumpled on the floor.  So why do I keep turning toward it, willing myself to look my greatest fear in the eye.  Yes, there is loss when I choose to do so.  There is a way in which giving attention to an unknown, and only merely possible, not certain outcome, is waste, waste of present energy, waste of present joy.  I have certainly known many a day, eroded away by fear and anxiousness and sorrow.  I know my eyes have too many times glazed over with tears as I watch Solveig and Allistaire dance, wondering if it is the last time.  Countless nights, hot tears have slid down my cheeks as I lay in the darkness next to Allistaire, wondering how many more nights I have with her.  Yes, my choice to face the darkness has too often in turn stolen away life, life that didn’t need to be lost.  Ironically, in my yearning to take hold of life, I have let too much of it slip from me.

So there is loss, but, there is also gain, gain of a different sort.  For when I turn toward that darkness, I am also turning, turning toward the Lord, choosing and willing and determining to look Him in the face.  Because that is really what this is all about.  Cause the thing is, He is the One doing this.  He is the One determining all the days of my life before one of them comes to be.  In a flash, He could bring this to an end.  In a flash He could dissolve every and any cancer cell that still dwells in my child’s flesh.  The thing is, He has set me on this path and it is ultimately He that I wrestle.  I peer around at this terrifying land He has placed me in and I am repeatedly confronted with the question of is He good, can I really, really trust Him?  He stopped the life of that child that had begun to grow inside me.  He put an end to that life and made way for the life of Allistaire.  He knew what He was doing when He made her and He could have changed the course a thousand times, but this is where He has directed me.  The question I face over and over  is whether I will yield to Him and learn more and more what it is to truly rest in Him.  It’s pretty easy to walk through life, all beautiful and light and bursting with abundance, the Lord by your side.  But what of those darker days when He is ahead of you, stretching out His hand, beckoning you to come take His hand down a road where you can see nothing, nothing but your feet in front of you, where all around the blackness is thick with cold.  Your finite mind cannot grasp onto one good reason to walk into that black.  Your whole gut is in revolt and demands that your turn and flee.  You are pretty sure there is nothing good down that path, you can only imagine destruction in fine detail and sweeping, broad blows.

Like a contortionist, I strive to bend low and attend to the gritty details of blood counts and rashes and the nuance of appetite and energy levels while simultaneously fixing all my gaze above, on my beloved Christ who spans all of time and place and circumstance.  I grasp my side where the ache is still so tender from deep searing wounds and I gasp as I imagine wounds still to come, blows that threaten to take my breath and swallow my life.  But as I said, that God, that relentless God that won’t let me go, that God who formed me in my mother’s womb and who chose me in Him before the foundations of the earth, He is patient to wrestle with me, and continues to form my heart.  I cannot say that He has taught me something new this past month.  He has not pulled back the veil to reveal more.  I can only describe it as having the sensation of being suspended.  Somehow He is deepening my rest in His Word, in His promises, in His declarations of how and what this life really is and in so doing, He has moved me forward in Him by enabling me to dwell more in the present.  That doesn’t seem so profound.  How many times has the mantra, “take it one day at a time,” been repeated as though the simplicity of the statement means it is simple to do.  Never have I found something so hard as to dwell in the day, in the present.  It feels so often as though it is up to me to press on those towering walls of water, the weight of the past set up against the immensity of the future, both threatening to collapse down on me, crushing me like the Egyptians in the Red Sea.  But here, the Lord has made this strange space, this open land between the past and the future.  He is forming for me a way through, a way of refuge on dry land.

I somehow feel more aloft.  A little less fettered.  A little less burdened.  A little more buoyed up in Him.  A little more content to trust that He holds the weightiness of my past and my future.  Those walls of dark water rise up on either side and I can feel the energy and rush of their cold spray, and yet mysteriously, here I am, in the middle, right between the already and the not yet, right between grace past and grace to come, delighting in grace now, grace present.  I couldn’t even bring myself to make plans in Seattle for anything past Tuesday afternoon, when Dr. Gardner would call with results.  I knew that the whole landscape of my life could shift and break once again just as it did those few years ago when the continental plate repositioned 14 feet, causing the tsunami in Japan of terrifying proportions.  I had already been swept away once, it did not seem outlandish that it could happen again, especially as the details of life repeated, repetition from a year ago.  I asked the Lord to help me just enjoy the days that led up to our departure, just let me soak them up, not with morbid preoccupation that they may be last days, but form in me a new pattern, a new way of dwelling in the present, of delighting in the now that does not require loss to illuminate value.  And He answered that prayer.  As I pulled out Allistaire’s piggy jammies from the drawer that Saturday night, I found my mind drifting toward the question of would she again sleep in this room.  So I asked the Lord again to come to my aid.  I turned my eyes to Allistaire and fixed on delighting in her form and the childish, adorable lilt of her voice.  As the girls danced that night to crazy, hard-core music, I  sat with contented smile on the couch, tucked in Sten’s arm.  What a life I have, what gift, and I am consuming it, taking it into me not like last rations, but like manna, like nourishment for the day.

Sometimes walking with the Lord really is like wrestling and you can barely get your breath.  He seemed to just not let up, so continuous was His work in my heart in those two weeks before our return to Seattle.  I was thankful but it also seemed like relapse was ineveitable, simply because of how much He seemed to be accomplishing in my heart.  Again, I resolved to not live with dread that Monday and Tuesday but to attend to the details of the day, taking delight wherever I could.  We arrived at the hospital at 9am on Monday, January 23rd so that Allistaire could drink the giant cup of apple juice with the contrast in it, in preparation for the cat scan to come.  For someone Allistaire’s age, they automatically schedule anesthesia for the cat scan, not assuming a nearly 4 year old can stay still for the 3o seconds it takes to form the image.  But I was pretty sure she could do it – she did well in September the last time she had a CT and I hoped to avoid a day with two sedations.  They velcroed her in like a little papoose and she did a fabulous job of staying still.  Labs were then drawn and we had about an hour to wait before we would meet with Dr. Gardner.  Allistaire had no problem passing the hour glued to her iPad, and I had a great book, “Wednesdays Were Pretty Normal,” written by a dad whose son had ALL, the more common form of childhood leukemia.  You might think that reading about a kid with cancer wouldn’t be the best distraction as we waited for CT results, but in fact, reading of the father’s pursuit of the Lord was exactly the sort of spurring on that made those 60 plus minutes a restful yielding.  My hands only grew clammy as we honed in on the 10 minute mark before we would see Dr. Gardner.  When we were in the exam room with vitals already taken, I was alert to the door opening and taking that first look at Dr. Gardner’s face, like looking at tea leaves to portend the future.  Doctors, they drive me crazy sometimes, don’t ask me how I am, I don’t want to chit-chat…how did the CT look?  “Oh it’s good, it’s good, every things clear, ” she says like this the only reasonable outcome.  “And her labs are good too.”  I look and still see that blasted hematocrit of 34.9 that I was so hoping would be have risen.  But, it’s steady and the CT is good, maybe it’ll be okay, maybe the bone marrow will be good, maybe.  Thank you God.  Thank you, thank you, thank you.  The only bomb of the appointment is that doctors had discussed Allistaire’s case and decided they wanted her to do yet one more round of chemo.  This was scheduled to be her last but they want 6 rounds post remission which would result in a total of 7 rounds of Azacitadine.  It’s all a guessing game really and what they decide is based almost exclusively on what has been done in adults as very few children have ever been given this chemo, this mysterious substance that somehow changes the DNA of the cancer cells making them more identifiable to the body’s own immune system for destruction.  One more round of chemo?  I’m not going to argue, bring it, let’s do what we have to do to knock that junk down for good!

The long day continued with a 45 minute delay past the scheduled bone marrow aspirate, but at last we were there once again, taking up our familiar positions, Allistaire lying still unconscious in the bed they wheel into the recovery room and I in the adjacent chair, taking the odd picture of my child whose just had her bone plumbed.  If you’re wondering why Allistaire wears the same outfit in so many pictures, the one with the fantastic purple plants and the outlandish coral flowers, it’s because this is her weigh-in outfit.  Every single time she gets weighed she is wearing the same sweater, pants and socks.  I don’t want to have to wonder if her weight is being impacted by the bulk or lack there of her clothing.  So it was Monday, weigh-in day in Seattle and she had only dropped .2 kilograms and here she was again, for the 16th time, waking up from anesthesia after having a bone marrow test.

Recovery room is a bit of a misnomer as you pretty much get kicked to the curb the moment your kid is conscious and their vitals are determined to be stable.  There really is no recovering, no, you as the parent are kicked out the door with a kid crazed from anesthesia.  It’s not my favorite, at all.  On this day, however, we were simply moved to another room where we were to wait for Dr. Carepenter, the SCCA GVHD guru doctor to come see Allistaire.  We’ve only been able to see him once, way back in September and are supposed to see him every 6 weeks but between his schedule and ours it hadn’t worked to see him again until this visit.  He was currently the inpatient attending bone marrow doctor and was making an exception to come see us in clinic since we were technically in the same building.  She was in her crazed post-ansesthesia, haven’t eaten or drank all day and I need a nap real bad state.  Not probably the best time to examine Allistaire but this was our only window of opportunity with Dr. Carpenter.  He did his best to evaluate her and felt like she looked like she was doing well with no evidence of GVHD.  He approved the taper of her prednisone, which if all goes well, would be complete in 6-7 weeks.  At that point she would no longer be on any immune-suppressants which would be SO awesome.  We want her off those steroids both because of their awful side effects on the body and because we don’t want to dampen her own immune system from maximizing its fight against any remaining cancer cells.  Other than a flaring of GVHD, the only other possible concern about this taper is that as we near the dose that equals the amount of steroid her body’s own adrenal glands are supposed to make, we could see GVHD-like symptoms that may in fact be a result of her adrenal glands being tired and not “awake.”  Because her body has been being supplied steroids orally in the form of prednisone, her body has not had to rely on it’s own ability of the adrenal glands to produce the body’s natural steroid.  Should this become the case, they would prescribe a different steroid, hydrocortisone, to supplement while her adrenals wake up.

Our appointments Monday finally wrapped up and all we had to do was wait until late Tuesday afternoon to hear from Dr. Gardner about the Flow Cytometry results from her bone marrow aspirate.  There would still be chimerism, morphology and cytogenetic results that would take longer to come back, but the Flow is considered to be the most sensitive and definitive test.  Again the Lord sustained us throughout the day and I amazingly and genuinely felt at rest, knowing my Father who spoke the world into being, who determines every atom in existence, who knows all the days ordained for me, the God who turns darkness into light, He was the One who would really being revealing the next step in our journey that day.  I won’t lie though, twice Dr. Gardner gave us the worst news.  On that Tuesday afternoon, with glib delight in her voice, she called with the news that the first pathologist who reviewed the results of the Flow Cytometry was “very confident,” that there were no detectable cancer cells.  Of course, protocol required a second pathologist to review and confirm results.  Dr. Gardner agreed to call back when the final report had been made.  Not even a half and hour later, she reported again the absolutely glorious wondrous news that my little sweet girl was devoid of any cancer based on the very best of man’s technology’s ability to detect.  I could hardly believe our good fortune and God’s mercy was again made manifest in the tangible flesh of our little girl.

Can I tell you how delighted I was to take Allistaire to the hospital Wednesday morning, January 29th for her sixth round of this chemo?  Oh how I relished in seeing that fatty syringe of chemo locked into the pump and line going down, connecting to that line burrowed into her neck, the pulse of her heart blasting it into all the veins throughout her body.  Yeah chemo!  Sometimes you want chemo, sometimes chemo is gift upon gift.  In our appointment with Dr. Gardner on Monday, she had marveled at how well Allistaire’s body has held up under all this relentless assault.  Her liver, kidney’s, and lungs have done remarkably well.  They remain healthy as much as we can tell.  Even her heart, weakened by the chemo from her first bulk of treatment, continues be only minority effected.  And to add gift to gift, Dr. Garder, with twinkle in her eye, suggested we plan to have Allistaire’s line removed at the end of her next round of chemo.  What?  Oddly, it all seemed so fast, this year stretched out so, so long could actually, maybe coming to an end?  Allistaire is scheduled to return to Seattle and begin her last round of chemo on February 24th and have her line pulled on Tuesday, March 4th.  We would be home on the 5th, the day before her 4th birthday, a day I really didn’t know if I would ever see.  I rejoiced in all this amazing news, but held out a bit in my heart, wanting to get those last results.  And then one by one they came back, “in morphologic remission, ” 100% donor cells in her whole marrow chimerism test and no evidence of the MLL rearrangement by cytogenetics or FISH.  I look forward with bewildered joy that the end of her treatment is actually in sight.  It is actually just less than a month away. Inconceivable.

Life in this war-torn land has left me a little jumpy though.  I live today, taking in the joy of today’s abundance, but as always, I don’t count on “good” results tomorrow.  The tentativeness of our life was once again affirmed the very next day.  Thursday evening Allistaire threw up twice at our friends house.  This was unusual for her and didn’t fit her typical pattern of chemo-induced nausea.  By Friday morning, she had thrown up twenty times.  I lay beside her all night, helping her to get it all in the little crescent-shaped mauve bowl, holding her from behind as her body convulsed and retched, rotating the blankets when she didn’t make it to the bowl quick enough.  Sometimes we had a 10 minute lull, sometimes as much as 45 minutes in between.  I tried to get her to drink as much as I could, knowing how swiftly she could become dehydrated.  A few hours before we were scheduled to come in for chemo, I called the HemOnc fellow on call and asked for fluids.  It was our old friend, Urmilla who has known us from the beginning.  She was on it.  She would order fluids and have the on-call doc in clinic take a look at her.  By 8am the vomiting had finally stopped, though we had barely slept.  I reported two large diarrhea diapers as well to the doctor.  As the doctor lifted her head that morning from examining her, she asked if Allistaire’s liver was always that large.  What?  It’s never been enlarged as far as I knew.  My only comfort was knowing it couldn’t be cancer, so recent were her good results.  The doctor order blood cultures, labs, chemo to be held and scheduled an ultrasound.  She feared a possible clot in her liver given all her meds that increase risk of clots.  She wanted to admit Allistaire so she could be “followed.”  Oh no – I did NOT want to go back there – Allistaire had not been up to the 7th floor oncology unit since she was discharged after transplant in July.  I asked if we could please, please wait for some test results.  Antibiotics were given along with an IV dose of hydrocortisone to help with the stress of her illness.  A stool sample was taken.

Then just as suddenly, the world tilted back to normal.  Our sudden rush down was replaced with release.  Her labs were fine and upon a second examination, Allistaire’s liver felt pretty normal.  Perhaps it had felt so large because Allistaire had been laying on her side, the doctor explained.  Well good grief, I would sort of expect the doctor to have noted that possibility.  But what can you say, when seeming disaster has been avoided, the only real response is relief and thanks.  Allistaire slept through it all, so exhausted from the night before.  So we went  back to the house, she slept, I got just enough food into her that I could give her meds without upsetting her tummy again.  That night we ended up in the ER for several hours due to a fever of 102.8 for vitals, more blood cultures and a nasal swab.  Quite remarkably, this was the very first and only time Allistaire has ever had to go to the ER for a fever since she was first diagnosed.  This is virtually unheard of, so I felt we were due and I really couldn’t complain, despite being so fatigued.  Before we left, we got back results from the nasal swab that Allistaire was positive for enterovirus which likely explained the bought of vomiting 24 hours before.  Saturday afternoon, results of the stool sample came back positive for C-Diff, a nasty “gram-positive spore forming bacteria,” that causes horrific abdominal cramping and spectacular amounts of diarrhea.  Up until that point Allistaire had only had minimal diarrhea the past few days, but it was as if those test results signaled the onset of amped up symptoms.  The poor girl was just a wreck.  She felt miserable.  She was nauseous from chemo, in significant pain from the abdominal cramps, didn’t want to eat anything for days, was utterly fatigued and had me putting on the pressure to get food in so that I could get in all the meds that require food in the tummy, all the while knowing her weight was plummeting. It really was almost the sickest I’ve seen Allistaire.  She was unbelievably grumpy for so many days.

The remaining days of chemo were rough and just days to get through.  The one highlight, other than of course the glorious test results, was the joy-yelling of watching the Superbowl with my parents.  I don’t give a rip about football, but man, you could not help but be giddy.  For days and days before the Superbowl, the entire city of Seattle was blanketed in blue and green and sheer energetic, zeal and hope.  And then, wow, I don’t care who you are, you HAD to love that game, well I guess unless you’re one of those sad, so sad Bronco fans.  Let’s just say, it was a good day to be in Seattle on Monday, February 3rd.  The air was alive everywhere you went with collective delight combined with a bit of shock that the Hawks and the 12th Man did it!  They really won.  It was fun to say the least.

Another Monday brought another clinic appointment and another weigh-in.  Allistaire’s hematocrit had dropped to 32.6 but was no longer accompanied with an automatic fear of relapse.  Her weight dropped almost a kilogram, from 16.4 to 15.5.  The doc assumed at least half a kilo was probably water-weight loss and the other half due to not eating for so many days.  She was not concerned as the weigh loss could be easily explained but said we would need to watch her carefully.  Oh but wait, I exclaimed, I forgot to dress her in her weigh-in outfit.  I determined to get another weight the next day in the proper outfit.  Tuesday brought the last day of chemo, and extra fatty dose of fluids with some added electrolytes because her phosphorus and potassium had gotten so low from all the diarrhea.  The fluids only succeeded in bumping them up slightly so I was instructed to give her supplements on the drive home the next day.  Prior to fluids she weighted a nice 16.2 kgs.  I’m not sure how that happened because I wouldn’t have guessed the sweater and pants weighed that much more than the shirt and skirt she had worn the day before, but I was never-the-less pleased.  I’ve heard of kids stuffing things in their pockets for weigh-in, knowing a feeding tube was imminent if they didn’t make their weight.  I get that.  Many how tempting to keep a big, wet diaper on her for weigh-in.  Tempting.

In the early hours of Wednesday morning, February 5th, Allistaire and I began our journey east.  The sky was just barely beginning to betray the impending morning as we drove over the floating 522 bridge.  As we ascended Snoqualmie Pass, the light illuminated a world everywhere covered in the glory of white snow.  How did God know just how beautiful that creation would be?  How the contrast of white against the dark of evergreens and rock would thrill our spirits?  The pink wash descended on the white peaks in my rear view mirrors and I did my best to multi-task driving I-90 with as many glimpses of the Stewart range spread wide in the spectacular beauty of pure snow with sheer pink morning light overlaid.  On and on we drove through endlessly beautiful sights, all skies blue and roads bare.  From near light to end light I drove, and Allistaire slept.

I marveled that the season had so shifted that I arrived home at dusk, a time as beautiful and other-worldly as dawn.  The four of us went to bed on an exceptionally cold night, but in our own beds.  I marveled that God had once again brought us home.  Thank you Father.  There will never be words sufficient to thank you for all that you have done.  Perhaps that is part of why we need eternity, eternity to marvel at all that you have done, for all your beauty, all you mercy, all your gentle kindness through times of light and dark.

“It is not possible for us to know each other except as we manifest ourselves in distorted shadows to the eyes of others. We do not even know ourselves; therefore, why should we judge a neighbor? Who knows what pain is behind virtue and what fear behind vice? No one, in short, knows what makes a man,and only God knows his thoughts, his joys, his bitternesses, his agony, the injustices committed against him and the injustices he commits.
…God is too inscrutable for our little understanding. After sad meditation it comes to me that all our lives, whether good or in error, mournful or joyous, obscure or of gilded reputation, painful or happy, is only a prologue to love beyond the grave, where all is understood and almost all forgiven.”     – SenecaIMG_7276 IMG_7293 IMG_7304 IMG_7319 IMG_7324 IMG_7346 IMG_7383 IMG_7385 IMG_7393 IMG_7415 IMG_7422 IMG_7428 IMG_7440 IMG_7446 IMG_7449 IMG_7456 IMG_7471 IMG_7473 IMG_7474 IMG_7476 IMG_7482 IMG_7486 IMG_7504

17 responses »

  1. I was checking my email when I saw your new post come through and as always I’m a little giddy and somewhat trepadatious to devour all the words you’ve written. I started reading your blog about this time last year and honestly ever since then, just knowing your story has given me a new perspective on life with children. We have caught every nasty bug out there this winter and though I am embarrassed to say I still complain in the moment…there is always that check where I am so thankful to not have to endure what you do. Why Lord? Who am I that you show such favor. Then I always remind myself…for today…nothing is promised tomorrow. Thank you for sharing your journey to help all to see, whatever The sovereign hand of God brings into our lives, will be met at that moment with His sufficient grace. Oh how I continue to pray for Allistaire and your family. I so wish she could join us for Markelle’s 4th birthday on Feb. 26. Praising our gracious Heavenly Father that we each get to enjoy the wonder that is 4 year old girls! Blessings!

  2. Thanks for the update and pictures! It’s interesting that you would quote Seneca at the end. I’ve had that displayed above my desk at work for 18 years! We are praising God for His mercy and grace. Thanking Him for the multitude of little blessings each and every day. Love ya’

  3. Rejoicing! “Great is thy faithfulness, oh God my Father. There is no shadow of turning with Thee. Though changest naught, Thy compassions they fail not. As Thou hast been, Thou forever will be.” Love your family and joy is flowing from my heart!

  4. Not many people can relate to the road you and Allistaire have traveled, and I am so grateful to have shared in this journey of your precious little one through your blog. I love the boots…and the doggy…the pink jammies, and headsets…and her sweet smile! It’s so Allistaire! Praising God with you and singing songs in my heart! Blessings to you and your family! Much love, Terry

  5. Thanks so much for posting the update on your precious little girl! She has been in my prayers and the Lord has answered. Jai, I can just feel your emotion in your writing. Those days with the vomiting must have been so very hard. Enjoy everyday at home and with your family. They are gifts from God!

  6. I am so glad for the wonderful news! When I get the notification, I take a deep breath- please Lord. I am a BSF person, too. Your writing is incredible. Continue to pray daily for Alli

  7. Delightful. Just delightful. Those girls’ faces in their sunglasses in… the Patagonia outlet? Scary that I recognize it. I thrill with you for the good news coming in on sweet A’s health! It was good to see you today in BSF – hopefully soon I’ll get to hug you and maybe even exchange words and, I don’t know, a phone number. 🙂 Maybe I’ll start haunting the Wild Crumb. Love love love to you all!

  8. Ugh, the C-diff monster! We know that particular form of misery all too well. So sorry Allistaire had to go through that!
    But oh so much more glad for the good results. Love from the Thomases!

  9. Oh, your words, Jai. Thank you for articulating so beautifully what is happening in your heart, your mind, in the body of your little girl, and in your world. God is upholding you so well, and the things you are learning about walking with Him are instructive to me, too. I am humbled by your submission to all that He is doing, in a spirit of worship and even, joy. What a paradox this walk of faith in Christ is! Joy in the midst of suffering….knowing at least in part the purposes He is working out of it all, trusting in His character, and keenly aware of His nearness. I really am grateful to be able to walk through this time with you, Sten, Solveig, and Allistaire….by prayer. You have made yourself vulnerable by sharing with us all the “rawness”….thank you for that. So good to belong to the body of Christ!

    If you receive a little box in the mail, and think, “who in the world?!” It is from me….just wanted to send you a little “beauty in a box” to brighten your days. You’ll have to supply the spring-time blossom for each one! {smile}

    Oh yeah….you don’t know me! We met years ago in Bozeman, at church. I am Lisa Phillips, writing from the western boonies of Mongolia. (Hannah’s mom). I couldn’t find an email address for you, so tried to call and write Jess, but didn’t hear back. (I must have old information for her.) My email: tomlisa1982 at gmail dot com

    ….much love from afar, dear younger sister….

    Lisa

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