where we are

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I’m packing up Christmas today and trying to tidy the house.  I needed a silly happy picture to add here to cheer up this post a bit.  I’ve dreamt the last two nights about packing boxes.  We have to move out of this sweet little home and we don’t know where we’re going yet.  God knows, and it is all in His hands.  So it’s a bit bittersweet, our last Christmas in this house that has held some very dear and difficult years in our family story.  But we look to what’s ahead and we fix our eyes on eternity’s shores and we smile.  We’re just pilgrims here, anyway.

I wanted to write a quick post to update you dear loved ones on where we are with Phoebe.  I’ve posted a bit about her health here and on other social media outlets, mainly because I have felt that God has called our family to live this story openly.  To share as much of the process of it and the aching unknown of it as we can because, friends, this is life!  So much uncertainty!  It would be far more comfortable for me to share with you all the tidy finishes and the nice happy endings, but so many of you are in the middle of your own unknowns.  So many of you are facing unfamiliar terrain, loss, grief, hurts, bad news of your own.  Those of us who have lived just a little measure of time here on planet earth know what it means to suffer.  You just can’t get through life here unscathed.

I don’t know what the end of this story is going to be.  It hasn’t gone at all like any of us expected.  Even her medical team is finding her case to be perplexing.  That’s never encouraging.  How will God work this out?  How is He going to provide for us?  What is His purpose in this?  Purposes, rather, because I know He is working on so many levels.  Why has He entrusted this to us?  I don’t know.  But I believe He wants us to make Him known in it, to share how He is caring for us, how He is carrying us, how He is sustaining, how He is providing, how He is meeting us and satisfying us even in this painful reality.

I hope that brings hope to you, dear reader, in your own aching unknown.

Phoebe was diagnosed with celiacs disease a year and a half ago, after feeding issues and growth issues since basically day one of her sweet life.  It was a relief to finally have an answer, scary and difficult as that answer was.  We have continued to wait for the response to the gluten-free diet that we should have seen with Phoebe, but it hasn’t really come.  She has had spurts of growth, then she will lose weight again.  She has spurts of a better appetite, then she will refuse foods and seem more tired.  She has basically all the same symptoms that she had at the beginning.  People kept telling us to be patient, that it can take 9-12 months for the gut to fully heal, but we passed that mark and Phoebe seemed to take a turn for the worse.  We recently had more blood work done and her results showed a fairly elevated level of antibodies.  This would normally indicate that she’s been ingesting gluten somehow.  However, without belaboring details, we are 99% confident that she has not.  Thus they wondered if the tTg could be inaccurate and ordered another endoscopy and colonoscopy to also check for Crohn’s disease, another autoimmune disease.  We just received her results a few days ago.  The doctor found blood speckled all through her stomach and small bowel, which she believes is irritation from stomach acid.  The other parts of her body seem normal, but her small intestine is showing severe active celiac.  This is terribly discouraging to me, because her body is acting like she is ingesting gluten, and is attacking itself as if it is, but she isn’t.

At this point, we wonder if she is experiencing a cumulative build-up effect of eating trace amounts of gluten which  is allowed in gluten-free products.  We will probably pull out all grain and dairy from her diet and see if she improves.  The difficulty with this is that phoebe is the pickiest eater ever, and she has never really eaten meat or vegetables.  We do regularly work with her on this, and have also worked with a feeding team in the past to help her, but have never made much progress.  She will try very hard to cooperate and it usually ends with her gagging and then vomiting.  Grains and dairy  and fruit are the bulk of her diet, and to take more away is very hard for a 6 year old.  We fear that she will just stop eating, as she has done in the past when we tried going grain and dairy free.  If this is the case, we will start a feeding tube.  If she still does not improve on this diet, then we will have to begin steroids and immune suppression.

This news has felt devastating because we have worked so hard and sacrificed so much in the past year and a half and it feels like we’ve made no progress.  Of course, we have made a lot of progress, but in my heart I was hoping we would be seeing improvement by now rather than still grappling with unknowns.

So this is where we are.  No clear answers yet but at least a direction to pursue.  For those of you who want to pray along with us–pray for us as we break this news to Phoebe.  Pray for her to be willing to let go of a lot of her new favorites and learn to like other things.  Pray for this route to bring answers very quickly as I don’t feel we have much time to wait for improvement.  Pray for wisdom and guidance for us and her doctors and dietitians.  Pray for provision for us.  Pray for me to be joyful and focused and lighthearted as we move forward, rather than weary and heavy as I feel right now.  Pray and watch with us for healing, total and complete.

So many of you love my girl so much and so well, and I can’t tell you what that means.  We will keep you posted as we go!

God is our refuge and strength,
    a very present help in trouble.
Therefore we will not fear though the earth gives way,
    though the mountains be moved into the heart of the sea,
though its waters roar and foam,
    though the mountains tremble at its swelling.
(Psalm 46:1-3)

setbacks

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It’s been hot here this week, at least in my opinion.  I’m a big baby when it comes to heat.  We’re keeping a little kiddie pool filled on our porch for the kids to play in and cool off, which they often swim in in their undies and then run around the yard like little wild indians.  We try not to appear too white-trash but sometimes you do what you must to keep kids outdoors and away from screens while it’s hot and humid.

June has been sort of up and down.  My brother and his new bride came for a visit early in the month after their honeymoon to Iceland, and we had a blast soaking up as much time with them as we could during that weekend.  Phoebe is quite attached to her new auntie.

I took Phoebe for a weigh-in recently and found she had lost a little more weight and her BMI has dropped again from 7% to 4%.  I know overall since her diagnosis we have seen her gain about 5 pounds and gain a few inches in height, but the fact that she keeps gaining and losing and not having the kind of “catch-up” recovery that the research suggests she should has me worried.  We’ve been keeping a food journal the last week and going over her caloric intake with her nutritionist and she believes we should try and get another 400 calories per day into Phoebe.  That’s NO SMALL FEAT, I tell you.  It’s hard not to be discouraged and to feel like we are facing impossibilities.  It’s hard to not grow weary in this work and throw my hands up in frustration.  But sometimes you go on simply because you just have no other option.  This is the hand that has been given us, and this is the work the Lord has given in this season.  It makes me fall on my face a lot, yet I can see so much good in it all, even though I find my soul complaining often.  Some days are good and we feel strong and capable, other days the fear rages and the weariness threatens.  I have learned to be honest with the Lord and to just walk with Him in it all.  I cannot tell you what a comfort the Psalms have been to me in this season.  I am listening to them constantly on Sandra Maccracken’s new cd Psalms and also Shane and Shane’s Psalms, Vol. 2.  I’m reading them daily in Tim Keller’s book The Songs of Jesus.  I cannot tell you how often I don’t have words, yet the Psalms somehow impart them and pull the words out of my soul in prayer to God.  His Word is like oxygen to me.  We press on in hope and trust.

I’ve been helped by Sara Groves’ words in this video as she shares some about her struggle with depression and anxiety, specifically her question “What is the Gospel that saves me?”  When the anxiety builds, I come back to this.  What is the Gospel that saves me?  Health?  Ease?  A thriving child?  These things are legitimate longings of my heart, but will my soul survive if God doesn’t give these things?  At the end of the day, my hope isn’t in a certain result, it can’t be, because that is a frail hope.  At the end of the day, my hope must be in Jesus and the promise of a secure future with Him no matter what comes on this green earth, a future where He will finally heal all disease and right all wrongs.  I am beginning to understand Jonathon Edwards’ plea: “Lord, stamp eternity on my eyeballs.”  If I can shift my perspective, usually my view of the present changes and I am able to find my way through.

By the end of the summer if we haven’t seen considerable growth in Phoebe, our nutritionist is recommending we seek a second opinion by a pediatric celiac specialist, which will entail some travel to either Georgia, Boston, or Chicago.  Pray with me for growth?  And for wisdom and endurance in the journey.

In other random bits and pieces of news, I’ve been taking a few photos for my dad and husband’s building and remodeling company for their website and also to make a little extra income.  We were out snapping pictures of a gorgeous deck they built recently, and the kids were happy to see daddy and what he was working on.  I had to snip off my little Noah-man’s beautiful curls this morning.  He needed a bit less hair in all this summer heat, and I needed to see his eyes again.  I don’t do a terribly great job, but at least it’s free and he doesn’t mind my imperfect cuts.

I still love June, even with all of its ups and downs.

three little pounds

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One of the things I love about blogging (but is also sort of terrifying) is that those of you who read along with me here are reading a story in progress.  This story, my family’s story, the story God is writing in my life, through my life, it isn’t finished yet.  I have no idea exactly where it is going, what turn is coming up next, or what is just up around that bend. This blog serves as a place where I can keep a journal of sorts of my family life, the growing of my children, the growing of my own heart as I keep step with Jesus.  I try to be as genuine as I can be here with respect to the privacy of my loved ones, sharing what God is doing in our lives, simple and ordinary as they may be.  I believe strongly that we are participating in the work of His kingdom here, in the safety of these four (rented) walls, raising up warriors, worshippers, disciples of Jesus.  I believe He has given us this work for this season, and in the midst of a million ordinary moments, He meets us.  While wiping a child’s tears, He whispers to me that a day is coming when He will wipe all of mine away, too (Isa. 25:8).  While disciplining a child, He reminds me that it is the child He loves that He disciplines (Heb. 12:6-7).  While cleaning endlessly, He whispers to me that my labor is not in vain (1 Cor. 15:58), though it feels vain when children muddy what was just washed clean.  While growing impatient with the occasional foolishness of my children, He reminds me of His endless patience with me and my own daily and continual need for Him (Ex. 34:6).  Wherever I see beauty, He sings to me of His myriad beauties, and reminds me that His invisible qualities are clearly seen in what He has made (Rom. 1:20).

Somehow, these ordinary moments become an avenue, a road, a confluence where the truths of Scripture and my own heart meet.  Somehow, in His mysterious greatness, He can take what is ordinary and make it holy by His presence with me in it.  Does that make sense?

Anyway, all this to say, I see the Lord at work in my simple days at home raising these precious children.  He is working in me, walking with me, keeping company with me here. I hope to share that in the pictures, the moments, the stories that rise up out of our life onto the “pages” of this blog.  It’s a story that is in the process of bring written, and that scares me a bit sometimes, not knowing what is up ahead or how I might be able to share that with you, my sweet few faithful readers. 🙂  It’s not a story I’m in control of, but I know His promise to me is that He will perfect that which concerns me, and my future in Him is sure and secure, even as the waves of my circumstances tumult around me.

About nine months ago I shared here about Phoebe’s diagnoses with Celiacs disease.  It hasn’t been an easy journey.  My soul has gone quiet in a lot of ways, as I’ve been processing and working it out with the Lord.  She hasn’t responded quickly and easily to the diet change, as we had hoped, and so the work of finding how best to feed her and help her to grow, while gently working (with the help of a team of therapists) around her fear and aversion to food feels like it takes up about 80% of my attention.  That is terribly wearisome sometimes, and being prone to fearfulness already, it often requires a lot of spiritual warfare to keep my soul in a place of quiet trust in the Lord.

All of this front loading to say, we finally have seen some growth from Phoebe, 3 pounds since February (!!!), so we wanted to celebrate and take her out for a special date with just mommy and daddy to a local restaurant, Posanas, that has a dedicated gluten-free kitchen.  There are not many places we can take her to eat where we feel “safe,” and so this was such a treat for all of us.  My mom watched the other two kiddos (thank you, mom!) so we could both go with Phoebs, as she requested.  As we were driving there, she said, “This is the first time you and Daddy have both been with just me!”  I sort of laughed because of course that’s ridiculous, she is our firstborn, so there were two years where everything we did was just with her.  However, she’s right, we haven’t taken her on an outing alone with just the two of us all to herself.  She loved it (and so did we)!

We don’t go to downtown Asheville too often, but we should!  Look how beautiful this place is!  It was a particularly lovely evening, and we thoroughly enjoyed our time walking around on our way to and from the restaurant.  Phoebe ordered the ricotta gnocchi mac n’ cheese, Brandon and I ordered two appetizers (Prosciutto wrapped rabbit with a strawberry rhubarb sauce, and a different kind of ricotta gnocchi) and a gorgeous kale salad.  Phoebe didn’t think she was going to like her mac n’ cheese at first because it looked so different from what I think she was expecting, and she sort of wilted and almost started to cry when it came.  It was a brief moment of panic, but then she tried it and loved it!  She was thrilled that she had a knife of her own and a real glass cup, too.  The chocolate cake was simply to die for.

It was a special evening celebrating and thanking God for three more pounds, and for places to go where we can show Phoebe a whole world of foods that she can still have.  We are really thankful to those who work hard to create delicious, kid-friendly options for children like ours with special dietary needs!

So for those of you who are following along, for those of you who have been praying for us and for Phoebe, I wanted you to hear and experience the good news along with us and humbly ask you to continue praying, if you so desire!  We always have so much to be thankful for, and we ask God to keep us thankful even when we feel beset with groans and complaints and bad news.  It is wonderful to see Him working and healing and restoring our girl, and our hearts are full of praise.

 

new things

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I wound my first skein of yarn by hand into a ball and could finally cast onto my first shawl!  This yarn is truly dreamy to knit with, as so many others have said, but I’m not sure I’m crazy about the colorway.  I’ll see what I think when I finish up.  In some light, it reminds me of the ocean on a gray day, or of Phoebe’s little sleepy eyes, which makes me love it.  I finished up a little baby hat this week in that gorgeous super soft deep pink yarn.

Philippa has been really into pointing out all the “no-no’s” this week, walking around (or climbing on my desk) and pointing and asking, “no-no?”  As if she doesn’t know.  She is definitely going to be our craziest little one so far.  Last night after I pulled her out of her chair after dinner, I took off her pants which were covered with food.  Normally we bathe the kids right after dinner.  I was going to let her wander for a minute while I finished eating and next thing I know I see her naked bum walking around carrying her cloth diaper in the other hand.  She yelled “da-tye!” (bath time) and went running and squealing for the bathroom as I chased her.  She is hilarious and I have NO idea how she got her diaper off.  She is into everything, and she loves throwing laundry in the toilet.  Sigh.

The kids and I tidied up the backyard and the sandbox this morning, resurrecting it.  Phoebe is pretty excited about it being mud pie season again and I hope to add a few more things to her outdoors kitchen.  These past few days have been warm and sunny in NC and even though I didn’t think I was ready to see winter go, these warm days are so pleasant that I’m starting to dream up little spring projects for us.  Philippa loves being in the backyard and is content in the sandbox for quite a while.  We might see some snow again this week, but we’ll enjoy whatever we get, whether sun or snow or just drizzly cold.  It’s all a season, it all comes and goes, and each day bears its own gift and its own rub.

We met with a new nutritionist for Phoebe last night, a specialist in our area for Celiacs.  It was probably the first time I’ve felt like we really have an advocate who is able to help us, who is knowledgeable, compassionate, practical, and seems to really care.  We’ve met with a few others, and this was the first time it felt right.  After looking at what Phoebe is getting calorically per day, she was pretty mystified as to why her weight is dropping, even after 6 months on a gluten-free diet.  In some ways that made me feel better, but it also concerned me.  We should see and hope to see growth SOON.  One thing I really appreciated was the fat folder of resources she gave me for local restaurants with details about each one, best grocery resources, flour recipes, coupons, etc.  She encouraged us to give up oats for the next 6 months as there has been controversy recently on the processing of oats and unintended cross-contamination.  We also talked about trying to diversify the grains Phoebe is eating beyond mostly rice products, so I’m really excited to have some recipes to play around with millet, sorghum, amaranth, and some bean flours which are new to me.  I keep taking it a step at a time, a couple new changes at a time, which saves my sanity and makes it more manageable.

This week has felt like the first hints of spring, and I have told the kids to be looking for the very first buds on the branches.  Whoever spots them first will get a little treat of some sort, so they have been looking every day.

 

grief surprises

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Last week I went with a friend and all our kiddos at our local Nature Center.  It’s such a fun outing for the kids with a lot of space for them to run around and explore, a nice interruption to our usual Monday activities.  I think my friend and I both came pretty exhausted and spent, we didn’t cover much ground in terms of sharing updates or our hearts.  We just sat together and barked occasional directives at children.  It was simple, it was good.

*

When I got the phone call back in June of 2015 about Phoebe and her diagnosis with Celiacs disease, I was literally just getting the kids ready to walk about the door for my dad’s 60th birthday celebration.  I was supposed to pick up balloons and was hurrying to get the kids and myself dressed and ready in time for the 30 minute drive to nearby Black Mountain for the family gathering.  The nurse told me the diagnosis, and I could tell in her voice there was the sorrow of having to give bad news.  The words hit like a punch and then like a wave, washing back and forth over me again and again.  I wanted to cry but it was like everything inside me just froze and I had to press hold on it all so that we could go to my dad’s celebration.  There was a swirl of emotions, even excitement and joy because we finally had an answer that made sense.  After that, I never could really seem to get to the sorrow I felt.  Over the next few days, I went into “go mode,” immediately researching, placing holds on every book about celiacs at the library, visiting many different grocery stores in our area, cleaning out cabinets and getting rid of food, washing and replacing kitchen utensils.  There wasn’t time for anything else yet.  Tears came here and there, but never a good deep cry, never the feeling that I was able to “get” down to the buried emotion.  There was mostly anxiety and a tightness in my chest that just wouldn’t go away.

That was six months ago.

A few days ago I had a really difficult day at home with the children.  It was “one of those days” (all the mommas said amen), everything going wrong, with lots of yelling and failure, and it felt like a heavy hand just trying to push me down flat.  We stopped and prayed many times throughout the day, the children and I, but the heaviness just wouldn’t lift.  After the kids were in bed, Brandon and I were talking about it, I was crying, confessing, he was listening.  Then suddenly it was like something in my soul cracked wide open and it finally spilled out.  All the grieving.  All the fear, the terror, the exhaustion, the sorrow.  The sweet release.  The letting go.

See, grief is not something we manage.  It isn’t something we are in control of.  We want to hurry our souls through our pain — but it cannot be wrangled and managed as easily as our calendars or our laundry piles.

Grief surprises.  It lays dormant for all these passing days, then suddenly it breaks open over us and we are caught in the downpour.  We process it as it comes.  We are not in control here, we are carried on this journey.  The way of the heart is a mystery.  Grief cannot be packaged, hurried, tamed.  It can be silenced — but it will have its way, eventually.

Partially I think what triggered this surfacing of my grief is that most of Phoebe’s symptoms have stayed exactly the same, even with the gluten-free diet.  We are in conversation with her pediatrician and we will continue to pursue whatever options necessary to help her, but it has not been as easy or as simple as most of the books and doctors have implied.  A simple change in diet has not really made much difference at all, at least not yet.

It’s not spring yet.  We are still in a winter.  Others might think us silly for mourning so deeply something that, compared to other’s suffering and pain, is relatively minor.  I even think myself silly and frequently catch myself scolding my own soul.  But I am learning: grief cannot be controlled, managed, bossed around.  Silly or not, it must be acknowledged and allowed its time.

Our God knows.  He knows the way He has made each of us to work, He knows how sensitive we are, how slow or quick we are to process, how weak or strong.  He knows exactly what He’s doing, even when we do not.  That can make me angry, or it can be the greatest comfort.  When He seems to apply a pressure on me that is far greater than I can stand up under, when He carves a wide open space and leaves it empty — I want to be angry with Him, and sometimes I am.  But I also believe Him.  I believe that He knows best.  I believe His ways are higher.  I believe His plan is perfect.  I believe He is good, that He is light and in Him is no darkness.  I believe He loves me.  He loves me.

He loves you.

He is a safe place for our grief.  We can lay it all out before Him, piece by piece as it comes, and trust Him to carry us through it.  To show us why it hits so hard, why it hurts so much.  He is patient with us, suffering long with us.  He abounds in mercy and steadfast love toward us.  He goes with us, never retreating from our sorrow, never trying to hurry us on without bandaging each hemorrhaging part.  If we are really confident of His love for us — if we truly believe that nothing we can do can ever diminish His love for us, or increase His love for us — then we are free to come before Him in truth, without hiding.

It wasn’t coincidence, it couldn’t have been, that on Sunday as I worshipped with my church family, I held my Phoebe close as she stood on the chair next to me, singing out the words to the song “Oceans.”  The words took on new meaning, as I couldn’t help but think of the Scripture the Lord put on my heart for the year 2016.  I couldn’t help but think of the Scripture I had read just that morning only moments earlier in the car on the drive to church, the one I scribbled in my journal:

Let not the flood sweep over me,
or the deep swallow me up,
or the pit close its mouth over me.

Psalm 69:15

I couldn’t help but think of the lyrics:

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

What if the great and deep unknown He asks me to walk in isn’t some romantic call to overseas mission work, or women’s ministry, or a cute etsy shop business, or any other venture that I might find thrilling and appealing, but the hard, daily, and exhausting grind of learning how to feed my daughter, nurture her, and trust Him with her health even when it is terrifying and uncertain?  What if the place “where feet may fail and fear surrounds me” isn’t the wild poverty of Africa, as I once assumed it would be, but is the place of sickness and disease in my own home?  When I pray the prayer “take me deeper than my feet could ever wander,” what if He answers that by taking me through a deep grief?  When her growth is declining rather than improving after being on a gluten-free diet as a family for six months?

“When something breaks down or does not go as planned, we are given a glimpse of our great need.  Like a vast emptiness.  We pray for solutions, crying out for immediate help, but God desires to give us more.  To give something real.  Something we can see with our eyes and feel on our skin.”
(Christie Purifoy, Roots + Sky)

God sometimes carves open a wide yawning space within us and leaves it, seemingly, empty.  As if He is content to leave us aching, hollow, and groping.  We cry out for answers, we are hungry for His voice, we wonder how this can be the abundant life He promised us.

When oceans rise, my soul will rest in Your embrace.  
For I am Yours, 
and You are mine.

If you are grieving a loss of any kind today, know that I’m praying for you. Spring is coming.  The seasons always ebb and flow, like the ocean waves coming and going on the shoreline.  A wide open space is hungry ground, open to receive seed.

Behold, the winter is past; the rain is over and gone.  The flowers appear on the earth, the time of singing has come.

Song of Soloman 2:11-12

Whatever is life-giving

It’s Monday again, the beginning on a fresh week.  I’m always thankful, the familiar rhythms we keep here, all the while holding loosely as we ride the waves of change.  I’m not big into change, I like our “normal.”  Since finding out my four-year-old’s diagnosis of Celiacs disease, I’ve been trying to stay afloat in the wild waves of change.

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A few weeks back I read these ancient words by John Chrysostrom:

“Lord give us tears and remembrance of death.”

What a thing to pray.  Give us tears, Lord.  I think of how I’ve felt since finding out the news about Phoebe–like there is an ocean of tears I want to cry but can’t access.  It’s just down there somewhere, stuffed beneath.

Give us tears, Lord.  Sometimes we just need the release of a good cry.

A few weeks ago I fed our family, stacked clean dishes to drip dry in the sink, kissed them all goodnight and folded tired legs into my car in the dusky evening.  I drove over to my friend Megan’s house in a weary silence.  She and her husband have a small hobby farm nearby and have been living a simple organic lifestyle, as well as practicing the GAPS diet with their family as part of their journey to health + wholeness.  As I continue researching ways to heal my Phoebe’s digestive system to help her grow and gain weight, I needed to talk with someone who’s been down this road ahead of me.

Megan and I used to go to the same church years ago when we lived in a different town.  We found each other then with another couple and formed the sweetest little tight-knit community.  We discovered I carried our first baby, and Megan discovered she was losing hers.  We splintered a bit, then.  We took a job forty-five minutes away, and they helped us move in and settle.  We said we would stay close, but the distance and busyness of new seasons filled our days.  Then they moved closer to where we were, and we ended up taking a job that moved us back toward them once again.  Now we are a few minutes away from each other.  I haven’t spent much time with her over the past few years, but lately we’ve been trying to squeeze in more visits.  These years with young babes and trying to get a start as a family with first homes, it fills our days to the brim.

Pulling up her snaking drive, gravel crunching under tires, the summer evening silence broken by the bleating of newborn baby goats, the quibbling of chickens, the sing-song of crickets.  I walked in, we greeted with tired smiles and hugs.  Her children were tucked into bed, her husband out of town for the week.

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I love being in another woman’s home, I’ve realized–observing her ways, her patterns.  It is so sweet to watch someone’s familiar paths–the way she pulled on her farm boots and grabbed a bucket of feed to take to the goats.  Our chatter and commiserating and quiet laughter as she tore a handful of mint from her garden, steeping it directly in water, pressing it through, handing me a steaming mug.  We sit on her front porch for a long while in the summer evening cool and quiet.  Later we move inside, she cuts open the package of a whole chicken, pulling out a drawer, grabbing that particular knife for chopping, the way her fingers unconsciously trace the onion, pulling back the papery skins.

We talk, we pour out honest emotions, we open hearts–all while she moves in the quiet rhythms of her home, her needful tasks.  Throwing a load of laundry in (as she apologizes).  Wiping out the bag which held her raw milk pick up.  Preparing the chicken to boil overnight.

Around her home scriptures were taped, phrases of healing were hung.  Index cards taped above the sink forming the shape of a cross.  A large paper with the word TRUTH written on it, surrounded by phrases and scriptures such as “God’s pearl” (with scritpure), and “Deserving of watch-care” and “Created to be a nurturer,” hangs in the kitchen above her stove.  Stories everywhere.  Well-worn paths.

Give us tears and remembrance of death.

Remembrance of death–sounds morbid, and on first reading, my soul shrinks back from this.  No, I don’t want to spend time remembering death.  But then I think of my Savior’s words: “Remember me.  This is my body, broken for you.  This is my blood, poured out for you.”  He wants us to remember Him, specifically to remember His death.  We like to speak of our risen Savior, and indeed our faith is in vain and we are of all people most to be pitied if He did not rise from the dead.  Why do our souls resist remembering His death, especially when He told us to do it often?  Whatever Jesus instructs us to do, it is life-giving to us.  Maybe we live best when we remember keenly our finality.

When I asked her what their whole experience has been with these extreme dietary changes, Megan answered, “Martha, it’s been life-giving to us.”  It’s probably what struck me most and stayed with me after our conversation.  These changes, these new rhythms to be learned–they are not easy, but they are proving to be life-giving.  I am finding the same to be true.

It’s been two months since we began this journey toward a healthy and growing little girl via dietary and lifestyle changes.  We are still researching and toying with the GAPS diet and a grain-free/dairy-free diet, but going gluten-free as a bare minimum has been fairly easy.  Our rhythms are different.  The toaster + bread machine have been replaced by our blender/food processor.  Bowls of nuts or rice are often soaking by our sink.  Ribbons of zucchini have replaced pasta.  Our buying has changed: grass-fed beef gelatin, Kombucha, bulk whole chickens to make weekly portions of bone broth.  I’ve been learning about best sources for bulk raw nuts, for filling out pantry with coconut flour, almond flour, medjool dates, tapioca flour, xantham gum, coconut butter, coconut oil, coconut milk.

Papers, printed recipes + stacks of books are scattered all over my kitchen counter.  The house cleaning suffers.  This process is daunting in many ways, exciting in others, especially as I start to feel a difference and feel better, to see my appetite changing and my body responding.  Phoebe seems to be responding, too.  Her eyes seem just the slightest hint brighter.  Her random occasional low-grade fevers have stopped.  She isn’t as tired.  Her appetite seems to be improving.

It is difficult, as any major change would be, but it is giving us more life, and for that we are thankful.

*    *     *     *     *

A special thanks to Megan and other friends like her (Wendy, Caroline, Liz + Anna, to name a few) who have reached out, shared a ton of resources, words of encouragement and hope.  I have found them and their stories to be the most helpful, but I have also been really helped by Carrie Vitt’s cookbook “The Grain-Free Family Table” as well as Danielle Walker’s cookbooks “Against All Grain” and her blog.

 

When Your Faith Survives

The house is quiet.  Oh, glorious quiet.  The first hints of light are streaking across the sky, the earliest birds beginning their song.  Bleary-eyed, I try to gather my wits, my scattered thoughts.  I try to focus my mind on the words I’m reading instead of letting them run in and out of my brain like a stream of water while I keep fretting over the days’ concerns.

I hear the faint creak of their door open, the hushed padding of feet over the floor.  She always runs when she turns the corner and sees me in that chair, sucking her fingers, hair wild in every direction.  Warm legs as soft as silk, long and scrawny, slide under the blanket next to mine.  We sit there like that for a long time, me reading quietly (or aloud if she asks) and sipping coffee slow, her sucking fingers and cozied up, skin warming skin.

It’s one of my favorite times of the day, I think it is hers, too.

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When I held her for the first time 4 1/2 years ago, my heart burst wide open in love.  I know I’ve probably always struggled with fear, but a whole new world of fear opened up to me when I held that impossibly tiny, wrinkly warm little bundle.  This kind of love–it’s painful.  To love this much is be wide open to a world of unknown hurts.

We had perplexing growth/feeding issues with her from the start.  She always seemed okay, never titled “failure to thrive,” but never really thriving either.  Since she was my first, I figured a lot of it was normal.  Still, the niggling fear that something could be wrong, that something wasn’t quite right kept nagging me.  We pursued every medical option that could have been a possibility, never finding anything.  I would push the feeling down.

In the dark of night, fears would loom heavy.  Please don’t allow any harm to come to her, Lord.  Please keep her healthy, help her to grow.  Please help her to eat, to have an appetite.  (It’s funny how in parenting, you have no idea the battles you will face.  Never did I expect to pray so much over a child to eat and have an appetite and to grow.)  The desperate and anxious prayers of a mother over her child would roll over and over in my mind as I would try to quell them and get back to sleep.

The feeling that something wasn’t right has never really gone away.  My second and third born children have not had any similarities to her eating/vomiting/growth issues.  Finally, at her 4 year check-up, we pursued some testing again.

It’s been a little over two weeks since we received her diagnosis:  Celiacs disease.  Finally it all makes sense.  Relief flooded in at the same time as a whole new level of fear.  I hung up the phone after receiving the phone call and my fingers flipped through pages desperate:

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Sure, in our day, we hear a lot about Celiacs, and the gluten-free diet is a current fad diet.  But to hear that my “perfect” little girl has an autoimmune disease–it shook me.  That trippy weird slow-realization that falls over you that nothing will ever quite be the same again.  A new normal will be found, but life as you knew it is over.  Part of me wanted to tell myself I was being a big baby.  This is awesome news, this is SO MUCH better than it could have been, there is so much to be thankful for.  And all of that is true!  Still, we are not ever helped when we push down our true feelings and scold ourselves for feeling that way.  No, we are to run to the mercy seat with those feelings.  We run to our God, who is a refuge for us and who urges us to come and pour out our hearts to Him, cast all our cares on Him, find mercy + grace in our time of need.  We let ourselves feel what we are really feeling about this news/trial/difficulty and we tell Him.  We pour it out in the safety of His company, the privacy of His all-knowing, already-knowing presence.  We let Him get to our hearts, tend to them.  If we don’t do this from the beginning, I think we risk hardening our hearts, cutting them off, and that is ripe ground for the seeds of apathy + bitterness to grow.

So when I was honest with myself, I felt betrayed.  We had prayed and prayed that God would work in her body, heal her body.  We had pursued multiple tests over the years.  We had fought the issue when friends + family were all saying to let it go, that she was fine, just quirky.

What do you do when God allows the thing you have plead with Him never to do?  

What do you do with that?

A few days after the diagnosis, we were driving in the quiet rain on our way to church.  A flood of words came to me, and I scribbled them as fast as I could into my journal:

Sometimes the greatest gift God can give us is the gift of betraying us.  The gift of the bad news.  The unsettling, scary diagnosis.  Because when our faith survives what we thought our souls could never survive–that is a gift worth more than gold.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.  (James 1:2-4)

In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. (1 Peter 1:6-7)

We are afraid of deep waters, resistant, and of course we would be.  But our God is a perfect parent–our parent who is more about perfecting us than pampering us.

When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.  (Isaiah 43:2)

He will at various times in our lives lead us through deep waters.  How else can He teach us, how else can He allow us to experience His everlasting arms underneath that keep us afloat?

The eternal God is your dwelling place,
    and underneath are the everlasting arms.  (Deuteronomy 33:27)

We resist the fiery trial–but it is only in the fire that our faith is really tested, proved, purified.  It’s only when we come through the fire that we can know: this ground we stand on is solid.  Real.  Firm.  Unshakeable.  The mountains may move and tremble; He remains the same.

God is our refuge and strength,
    a very present help in trouble.
Therefore we will not fear though the earth gives way,
    though the mountains be moved into the heart of the sea,
though its waters roar and foam,
    though the mountains tremble at its swelling.  (Psalm 46:1-3)

We cannot hope to be unaffected by the brokenness of this world.  We cannot expect not to suffer as His children the same afflictions and hardships common to man.

For he makes his sun rise on the evil and on the good, and sends rain on the just and on the unjust. (Matt. 5:45)

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. (John 16:33)

But He will carry us.  He will not change.  He is good, unfailing.

Let’s not measure His love for us by the hand He deals us.  Look at Christ:  what hand did His Father deal Him?  He was perfect, sinless.  Yet He had nowhere to lay His head.  He obeyed perfectly, was perfectly upright; yet He was despised, rejected by men.  The very ones He created, the ones He came to rescue hated + betrayed Him, cried out for His blood.  He plead with His Father to deny Him the cross, to take away that cup, but the Father did not.  And Jesus surrendered to His Father’s will.

He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? (Rom. 8:32)

Let’s not measure His love for us by the hand He deals us.  Let’s measure His (immeasurable) love for us in the way He gives Himself to us unfailingly, continually–the way He remains with us.  The way He carries us.  The way He gives more grace.  The way He gives us JESUS–and all the rich inheritance of promises found in Him.

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:8)

No matter what comes–our lives are hidden in Christ.  Our future is secure.  And it strikes me: this is the bi-focus of the Christian faith.  What are bifocals?  A pair of glasses containing lenses with two parts with different focal lengths.  Our focus in the Christian life must always be bi-focal: at once seeing the present and also looking beyond the present, through it really, to the future.  Let us look to our eternal future, our future grace and find strength in this moment of need.

“…looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross.”  (Hebrews 12:2)

Tis so sweet to trust in Jesus,
Just to take Him at His Word;
Just to rest upon His promise,
And to know, ‘Thus saith the Lord.

Jesus, Jesus, How I trust Him
How I’ve proved Him o’er and o’er
Jesus, Jesus precious Jesus
Oh for grace to trust Him more.