Tag: autoimmune disease

hope + a new beginning

MarthaKimball8 Comments

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In the early morning dark, all sleeping in one room at the Ronald McDonald house, we woke Phoebe up to prepare for her procedure.  Brandon had already run out to get starbucks for he and I, and then we gave her the sweater that I had knit per her request (and her pick of yarn).  We also gave her the unicorn as a gift, for her bravery, discipline, and perseverance in this three month intensive part of her journey.  So, wrapped up in that knitted love and comfort, and snuggling “Rosie,” she went back into her procedure.  I was with her until she was just going to sleep, and it makes me cry every time to walk away from her and leave her there, but it was a small measure of comfort to see her snuggled up in that bright yarn and snuggling her new friend.

We have heard back about the pathology report from Phoebe’s recent endoscopy.  Her intestines are showing full healing, healthy whole villi, and little to no active celiac damage.  You guys!!!  We are FLOORED.  We are in shock, disbelief.  It feels like a miracle.  You guys have prayed us through, you have prayed for our girl and God has answered!

Now, we aren’t totally through the woods yet.  Her blood work showed still elevated levels of inflammation, which is a bit perplexing.  I’ve heard different opinions about what this can mean, and I’m still waiting on a call back from the Winston Salem doctor about having another pathologist look over her biopsy results.  So I’ve been sitting on the results for a few days waiting, but I know so many of you are waiting and asking and wanting to know the results and I didn’t want to keep you waiting.  Especially on, what we feel, is still SUCH good news!

Is it all over?  Is the worst behind us?  I don’t know.  We still have a lot of work before us in helping Phoebe grow and in encouraging her to eat more/healthfully.  We plan to do some work with a naturopath going forward.  She will have quarterly blood checks and regular weight/height checks so we can monitor progress.  We believe God has been speaking to us about this season of intense difficulty coming to an end, but my heart is so tender and fearful to hope.  It’s easier to brace for the next wave of the trial sometimes than it is to rest in HOPE and faith.  So you can pray for that for Brandon and I.  Of course, we know that we aren’t fully out of the woods yet, it is too soon, but we do hope that from here we will see our girl flourish.

To those of you who have prayed for this miracle: how can we ever thank you enough?  You have prayed life and healing over our girl and we believe we are seeing these shocking results because of your prayers!  God promises that our prayers are effective and powerful (James 5:16) and that they can make an actual difference in things like this.  God cares about healing and bringing wholeness and restoration, as we saw Jesus constantly healing all the sick ones that He came in contact with, and as we are told that this was part of His earthly mission (Luke 4:18).  It is still part of His mission: taking back the lost ground, healing the broken parts, mending the ruined world, glorifying Himself and making His power and might known in our midst.

To those of you who have donated funds so that we can afford these treatments for Phoebe and so that we can continue her medical testing, how can we ever thank you enough?  You have been a huge part of this process and this result.  You have provided relief and help in a very tangible way to our family.  You have, more importantly, just overwhelmed our hearts with encouragement, with the sense that you are behind us, for us, and with us.  We know one day we will be able to bless others financially as you have blessed us, and we eagerly look forward to returning the blessing.  We will do so in the small ways that we can now.

We will keep everyone posted as we know more about Phoebe and as we continue on this journey.  For now Phoebe’s diet will change slowly and with a different approach than anything we have tried thus far.  She is already so pleased just to have her beloved cereal, and slowly we will phase in other things, but will also phase out things we don’t believe she tolerates well.  I will still need to make most of her food from scratch and from carefully chosen sources, so there is still a bit of work ahead for me in trail + error.

As my mother-in-law gently but firmly encouraged me last night, we will rest in this healing.  That this is the beginning, a new beginning, and we are thankful to our Faithful God and to you!

 

Whatever is life-giving

MarthaKimball5 Comments

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.

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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.