the night raccoon

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The boy who doesn’t like opening presents, who hides from his cake and goes under the table when people start singing him “happy birthday.”  He likes a small and simple day.  We let him open a few gifts from grandparents in the morning before daddy left for work so he had a few things to play with.  We walked to the park and he tried out his new crossbow.  Daddy came home from work early so he didn’t have to wait too long for the rest of his presents.  He requested pancakes and bacon for dinner, which was a thrill to the girls.  So we had that plus chocolate birthday cake.  He opened his gift from us which was a drum set, and it definitely was the highlight of his day.  We were so happy to be able to surprise him with something so unexpected.  He loves drumming and had asked for a drum awhile ago, and usually can be found beating to the rhythm of music with two railroad track pieces on the couch cushions.  I didn’t finish his sweater in time which is a disappointment, he even asked about it, but I’m almost done with it now and will share pictures soon.  I really can’t believe how much he’s grown in the last year and how he has transformed from a little baby to this big gangly kid.  So weird.

I left his cake on the table after we enjoyed some so that we could bathe the kids and get them to bed.  Usually Brandon and I will shower and get in our jammies after the kids are down.  We came out after our shower and Noah was standing at our door (out of his bed) with his hands in his mouth.  Brandon noticed he was all chocolatey around his mouth and at first told him he was going to spank him, then he started smirking and said, “well you’re just so darn cute and it is your birthday, but get back in bed.”  We were chuckling that he would get out of bed knowing we were in the shower and go sneak a bite more of his cake.  Little did we know until we came back into the kitchen what he had actually done.  (I wish I had thought to get a picture of it!)  His cake was scraped nearly clean, covered in little claw marks everywhere.  He had literally licked the icing off the entire cake.  Three days later on Phoebe’s birthday he snuck out of bed and licked the icing off of HER cake too, even though I had put it higher on the counter.  So he’s become a little night raccoon sneaking into our kitchen after bedtime.  He is quiet, this one, but mischievous.

 

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)

my strawberry girl

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She tells me her phoebe sweater is one of her favorite gifts and she’s been cozying up in it every day at some point.  The yarn relaxed so much after blocking it that even though I made a size 6 for my petite little 6 year old, it still is quite big and will fit her for a few years if she takes good care of it.  I loved knitting it and am so glad it is cozy and warm and a cheery red for her.  It reminds me of the bright red cardinals we see flitting around in the drab winter scenery, little spots of color in the long winter.  The bonnet was one of her stocking gifts, she has asked for one for months.  I think this one is so cute and it will get lots of wear.  We gave her the book “Phoebe’s Sweater” along with it, which has the knitting patterns in the back.

Her birthday this year was really calm and quiet and peaceful.  She wanted to open all of her presents before daddy went to work so we let her.  We gave her a violin and the sweater I had knit her.  Brandon had picked out a special necklace for her, it looks sort of “indian-ish” so it goes well with her latest imaginary play.  She had a few other gifts to open from her grandparents.  She wanted to go to the park to play, the one that has swings, so we spent the morning there.  The weather has been fairly mild lately so it was really nice to be out.  I let her skip her “quiet time” after lunch and we worked on her new legos and then snuggled and watched a christmas movie.  I baked her cake that morning, a gluten-free funfetti cake with my own buttercream icing and I covered it in strawberries because she loves them so.  She was soo excited about her cake, as you can see.

six

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There were no gifts under the tree that year.  We didn’t really even notice, which is a wonder for me, a gift lover.  Our hearts were caught up in anticipating a baby.  I was as any first time mom would be: nervous, anxious, excited, filled with wonder and worry and dread and joy all at once.  It lent a whole new meaning to the Christmas story, to the Advent season, to the waiting for the coming of the promised One.

And then you came, so quickly, taking us all by surprise.  I called the midwife at 6am on that December 23 morning, she said to take my time coming in, but I felt an urgency to get to the hospital.  By the time we left the house for the 45 minute drive to the hospital, I was desperate to get there, contractions coming in wave after wave without a break between.  We got there, checked in, chatted with the midwife for a few moments, and suddenly I was in transition.  Within an hour or so of arriving at the hospital, you were born.  In about three pushes, they laid you on my belly and I just remember your dark quiet stare.  We didn’t have time to think about medicating, we didn’t have time to call family before suddenly there you were.  The midwife sat down heavy in the rocking chair at the foot of my bed and said, “Wow.  Now that’s how it’s done.  You need to give classes to all these other ladies on the LND floor.”  I felt proud, but the reality was, it wasn’t really because of anything I did.  My labor with Noah was far longer and far more difficult with complications to boot.  Its crazy how little of it is up to us, anyway.  “Birth plans” and such–an illusion of control.

From day one until this day, six years later, it’s never been in my control.  What a year we’ve had, you and I.  In a way different than the other children, I feel like we grow up together–you, the firstborn, and I.  You, the one who throws challenges at us that we are hardly practiced for, and we learn as we walk through them with you.

You amaze me as you grow.  I can’t believe we are one-third of our way through our parenting journey with you.  Only twelve more years until you’ll be free and ready to take off on your own little wings.  I hate the thought!  I can’t believe its gone already and I’ll never have it back, all those precious baby years with you, so tiny and so new.  Yet each year with you is so much fun, as you grow and change and become more and more your own little person.

I love everything about you.  I want you to know, you are so very special, my phoebe girl.  God has mighty plans for you.  He’s already working in you and through you.  He has entrusted hardships to you at a young age, and He will be faithful to see you through.  He will be faithful to carry you all the way.  He may not remove the thorn, sweet one, even though we so wish He would.  But He will bring great good from it, so much good that you will one day marvel with great joy and say, “The Lord is good to all,
    and his mercy is over all that he has made…The Lord is righteous in all his ways
    and kind in all his works.”  (Psalm 145:9,17)  ALL of it.  All.  We won’t understand a fraction of it, but we have this promise in black and white–He is good to all, He is righteous in all that He chooses to allow or cause.

You are still one of the greatest gifts I’ve ever received in my life, you are such a treasure.  Through you God keeps teaching me that I’m not in control here–He is.  I’m so so proud of you, all your hard work, your willingness to try things that are scary and difficult for you, your quick turn to repentance when you’ve done wrong, your courage and bravery and general usual state of HAPPY.  I just love you so.  I treasured our day together today, playing together, snuggling, just keeping it simple, thanking God for the gift of life.

I love you so

Mommy

merry + bright

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December rolls in and we hang stockings and hang Advent ornaments on our Jesse tree.  We bake Christmas cookies and go to holiday parades.  We snuggle up and read books and make holly wreaths.  We watch Christmas movies, and I keep busy with gift knitting.  We go to our favorite nearby pottery place for their holiday open house, pick out free pottery cups while listening to live music, and the kids play in the clay.  We squeeze in as much time with family as we can.  Brandon’s parents came up this past weekend after we got back from Phoebe’s procedure in Winston Salem.  They took Noah for the day on Friday to the Polar Express and then spent the day with us Saturday.  We pretended it was Christmas morning and the kids opened their birthday and Christmas gifts from the grandparents.  Such thoughtful and fun imaginative gifts.  Nain made dresses for the girls for their birthdays, and they together made Noah a remote-control Mater truck from a ‘build-a-truck’ store near where they live in SC.  They bought all of the kids puppets and a puppet stage for their Christmas gift.  Nain gave Phoebe a painting she made for her.  Her paintings are extra special because they are bathed in prayer.  She prays over colors and then begins to paint, then pulls out what she sees.  This one was for “princess braveheart Phoebe,” which is their nickname for her, and appropriate considering the day Phoebe had had on Friday.  I love it and I think it will always be a treasure for Phoebe, too.  I’m thankful Christmas is a bit spread out all over this month.  I’m thankful for our daily Advent readings that ground us and keep us feasting on God’s word, keeping our appetites hungry for Him more than all the material things and activities surrounding this season.

Now, I’m off because dinner must be made and things prepped for a little boy who is turning four tomorrow.  I hope your season is merry + bright all the way to the end.

it’s beginning to look a lot like

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Christmas!  We are in full swing and leaning into the season.  There are little traditions every year that we keep, one of which has become cutting a tree at a favorite farm tucked away in little ordinary, inglorious Rosman, NC just outside of Brevard.  We went after church the first Sunday of Advent, and my parents tagged along.  We had a quick picnic lunch together on a blanket, than tried to get a few family pictures.  The past couple of years the farm owners have offered a hay wagon ride for free for the kids, which they love of course.  Then we got to work picking a tree.  I wanted a short and really fat one this year, and Brandon indulged me.  For $30!  It’s my favorite tree that we’ve ever had, I think.  These sorts of traditions are more fun every year as the kids get older and are more involved.  Nothing feels merrier than a fresh spruce twinkling in our living room, greeting us every morning while we sip coffee in robes by the fire.

Last year at this same farm.  What a difference a year makes.

 

november light

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Thousands of acres of forest are on fire here in NC.  The air is acrid and dry and we’ve been staying inside more than usual.  The smoke seems to have blown in again today and our throats feel dry and scratchy.  It’s hard to stay inside when the weather and light is so beautiful these early November days.  The smoke makes everything hazy and makes the sunsets brilliant, and yet I can’t quite feel that it’s pretty, knowing so much of the state is burning, and we have yet to see any rain.  We keep praying.

Yesterday it seemed to clear a bit and we walked down to our little neighborhood lake and explored in the last light of the day.  Everything looks so different,  open and quiet now that most of the leaves have fallen.  I sort of love when the colors fade to shades of gray and brown.  It feels like a clean slate.

It’s been a busy week of running around + unexpected interruptions.  We’ve been looking to buy a home (our first) since early summer, and we are still looking for the right place.  It fills most of the nooks and crannies in our schedule, and proves to be a pretty emotionally charged experience.  Often draining–both because of the work that goes into hunting, seeing homes with kids in tow, getting excited and disappointed, looking again another day.  We know God will provide in His time and way, and we look eagerly for it.  In the meantime, I really am content right where we are.  I feel wildly graced with the life I have been given.

But the pace this week has been wearing me out.  When I feel all hustly and stretched too thin, it does something in me to just grab my camera and go for a walk with the kids in our neighborhood.  There’s something grounding in it.  I’m so thankful for where we live and so happy here, it is quiet and peaceful and feels mostly empty.  Our neighbors tend to be retirees.  Putting feet to the ground around my home, paying attention to the changes in the season, the critters preparing for winter, the geese that have flown off our lake and south for the winter–it helps to quiet me and settle me and return me to myself, somehow.  It helps me to see my life with new eyes.

It’s hard to believe we are almost done with our first “semester” of school, Phoebe and I.  She has done so well, and we’ve both learned a lot in the process.  I love it and I think she does, too, though it fills up a good chunk of our week.  (It’s still far less than putting her in public school.)  I’m excited to take an extended break for the holidays soon and regroup.  She is already beginning to read, which feels like a big accomplishment to me in only a few months of work.  She absolutely amazes me with her curiosity, hunger, aptitude and ability.  She is a voracious learner.  She would sit and read books with me all day, and loves learning about anything and everything.  I think it’s very satisfying for her to have a structured time of learning.  I hope things stay this way and she always loves learning.

I’ve been furiously knitting, finishing up Philippa’s sweater (her birthday is in a few days).  It’s taken about 3 days to dry and I plan to weave in ends and wrap it up tonight.  I absolutely love it and hope she does, too.  She snuck a peek at it while I was blocking it, but she doesn’t really know it’s for her.  It’s so squishy and soft and nubbly and I want to knit one in my size.  I finished my first pair of mittens for myself last weekend while I was away at a hermitage.  I started the second mitten and didn’t stop knitting until it was finished, basically, within an hour or so, and that was really rhythmic and satisfying.  I’m thoroughly addicted to this craft.  Phoebe has been asking me to teach her and she is quite engrossed, also.  I think she feels quite grown up, sitting next to me, the both of us knitting, like we are sharing a secret.  She can’t get far past one or two rows before knots and slipped stitches, but she is watching me knit with a different sort of interest now and I know this will be something we will share in the future.

Brandon and I snuck away for a couple hours the other evening to do a bit of birthday/Christmas shopping for the kids, particularly looking for a little toy or something for philippa to go along with her sweater.  We had such a good time together and always have a BLAST shopping for the kids.  So much laughter and silliness and it felt like a date.

We visited my good friend this week to see her new baby, and take them a few snacks.  The kids have so much fun playing together and it was good for my friend and I to just keep company.  I snapped a few photos for her of the baby.  I love him already.  Its wonderful to be around a newborn again.

weekending

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Weekends are for making memories.  Slow mornings, second cups of coffee, extra snuggling, knitting, adventures and spontaneity, gathering with church family to worship, taking long naps, then throwing everything in the car and driving up into the mountains for an impromptu cookout and campfire with friends.  Watching children running through the long grass,  because kids need wide open spaces, and turns out, so do I.  Sharing a burger with the littlest, eating french fries cooked right in the fire.  Watching the sunset bathe the landscape in rose gold, fade to gray, then seeing the stars come out.  Pointing out Venus, Mars, and the milky way to the children.  These are the things weekends are made of (sometimes) and I hope you have a good one!

trick-or-treat

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As you can tell, I’m not a very enthusiastic mom about halloween. 🙂  I wish I was more creative in this regard, with hilarious family-themed costumes, something witty or smart, but it’s just not my strong point.  I mean, I spent the whole day yesterday with my shirt inside out and didn’t even realize it until evening.  This is where I’m at, people.  Barely able to manage my own grooming.  (I sure admire all of you witty, smart, creative fellow-moms, though!)  Maybe next year?  I just didn’t care that much this year to pull something together, especially being that we don’t plan to trick-or-treat with phoebe anyway.  Thankfully, the kids didn’t really care either.  She did want to dress up, so I told the kids they could dress however they wanted and we would at least go for a walk around our neighborhood when daddy got home.  Philippa was not having it at all, though she wore the kitty headband for a few minutes before chucking it.  Noah really wanted to be Batman this year, as opposed to last year when he was terrified of his costume.  I had previously bought some special candy/chocolate that the kids can have, and so I told them each to bring their little treat bag on our walk and I filled it as we went.  We just enjoyed a quiet evening and a beautiful walk, and came home to warm pork chili stew + fresh cheddar biscuits.  I think we are the only family in the neighborhood with young kids, and we didn’t go knock on any doors, but one neighbor saw us and ran to grab some treats for the kids.  Another drove by in her car to “catch” us and gave candy to the kids.  Super sweet.  As we walked up our driveway, our young-married-couple neighbors were just getting home, and so we chatted with them a bit and they gave the kids candy, too.  So I guess we did trick-or-treat after all.  It was the most chill and supremely simple halloween to date.  We hope you had a happy one, too!