continuing to hope

continuing to hope

My first post on this blog is a slight variation of this post.  It’s titled, the beginning of hope.  It’s where I began to chronicle my journey right after being diagnosed with multiple sclerosis.  I’m adding to and updating it today, March 24, 2018.   I don’t want to add too much to it based on my thoughts now because it’s real and raw about what God was beginning in me, but I want to come back to this sweet reminder, solid foundation, and trail-head.  However, I have re-read, updated, and added some details as I’ve walked this out over the last year and a half.  So, here it is:

Back-tracking to my MS story: when I was pregnant with Maggie, our 4th little blessing, I had these crazy dystonic episodes that would uncontrollably throw me to the ground in pain multiple times a day without much warning (think seizure looking). I saw a neurologist eventually and got medication to help and then the episodes subsided after Maggie was born, so we just moved on, thinking that it was spiritual warfare because they started the week we launched New City Church.  About 18 months later, I went blind in one eye.  Like, really blind. An eye specialist said it was optic neuritis, and that “tumors can cause this, you need to get at MRI right now”, so off we went for what ended up being a 3 day hospital stay to treat my failed optic nerve and get tests done. It never fails to amaze me now that I can truly say “I was blind but now I see!” After all that, the abnormal MRI, and other numbness, weakness, and tingling issues I had (that apparently aren’t normal even for having 4 consecutive pregnancies!), we knew that an MS diagnosis was all but official.

Then, several days later, when the lumbar puncture results came back, the answer was complete. Although we knew unofficially I had multiple sclerosis, reading words like: abnormal, high, at least 25 lesions on the brain, enhancement/active demyelination, can really do a number on your heart. I was stuck. Unable to move forward.

As I waited for the puncture results, I thought knowing an answer would give some satisfaction, but it didn’t. Instead, I was  putting my hope in something unable to meet my expectation.  I felt trapped. Trapped by fear, uncertainty, the inability to “fix it”. Most of all though, trapped by the answer. Maybe it was the finality of it that sucked out the breath of hope I didn’t know I was holding in. I’m amazed at how often we do this though –  put our hope in an answer.

Nevertheless, the Lord, in His mercy, rescued me from the darkness I was sitting in and brought me into the light of HIM. He reminded me that His mercies are truly new every morning. I journaled my way through fear and questions and clung to the truth of what I DO know and what I can ALWAYS be sure of, and that is this: getting God is more satisfying than any answer, or any gift for that matter.

If he allowed the answer, the prognosis, or the gift, to be more satisfying, then I wouldn’t seek him. It’s his grace that allows the answer, while potentially helpful, to produce little peace or confidence because then I would not seek, depend on, and trust him as the better and more satisfying answer.

WHO I get – Jesus – is far more satisfying that WHAT I get. An answer (or gift, or person, or circumstance) can neither produce, nor steal, anything from me.

ALL things are under HIS feet. The wind and the waves KNOW HIS name. The enemy may steal and seek to kill and destroy, but MY KING authors, and lavishes, and frees. And He is completely trustworthy, faithful, kind, loving, and beyond satisfying.

As I update these words today, about a year and a half into my multiple sclerosis journey, I’ve had 6 MRI’s, a few rounds of high powered steroids (I mean 1,000mg a day for a few days), new lesions on my brain and spine, started and stopped a two drugs that didn’t work, and started a new infusion drug that IS working wonderfully.  I’ve lost my ability to run because the pounding on my feet sends shock waves through my body and eventually causes my left foot to drop and stop working.  My vision is blurry when it’s hot and I can’t think clearly.  My legs are spastic and stiff every morning.  My body feels stress in a way thats strange and painful.  And yet, I’m ignited to do new and hard things I’ve never done before, like climbing walls and hiking up mountains and learning to sew; reading more books, homeschooling my kids; and taking more risks.  AND, I haven’t had any new lesions in over 6 months!!!

I can say with gut-wrenching honesty: MS can never take from me more than it can give me.  The incredible Joni Earekson Tada wisely says,

“God permits what he hates to achieve what He loves.”

I cannot describe the tasting and see that God is good I have experienced and the ways the Lord has met me.  I can say with the Psalmist, often through tears, “the lines have fallen for me in pleasant places; indeed I have a beautiful inheritance” (psalm 16).

So bring on the mystery, the questions, the unpredictability. Bring on the good days and bring on the bad days. Because if I could map it out myself, I would never in a million years do it this way. In my flesh I would never do it the way God does it. And I would never lead myself to the Lord. Thankfully, He is too good to let me do that.

I’ll close with two passages that have become my anthem,

Hebrews 2:8-9 “Now in putting everything in subjection to Him, he left nothing outside his control. At present, we do not yet see everything in subjection to him. BUT we SEE HIM … Jesus!”

Jeremiah 17:5-8 Thus says the Lord:
“Cursed is the man who trusts in man
    and makes flesh his strength,[a]
    whose heart turns away from the Lord.
 He is like a shrub in the desert,
    and shall not see any good come.
He shall dwell in the parched places of the wilderness,
    in an uninhabited salt land.

 “Blessed is the man who trusts in the Lord,
    whose trust is the Lord.
 He is like a tree planted by water,
    that sends out its roots by the stream,
and does not fear when heat comes,
    for its leaves remain green,
and is not anxious in the year of drought,
    for it does not cease to bear fruit.”

 

May you be like a tree and not a shrub too.  May you taste and see that He is good.  May you trust in HIM more than any gift, circumstance, person, or answer.  

the King tells a better story

the King tells a better story

I have an MRI coming up this week. As I was talking with Ryan about the schedule of events for the day – the MRI, the Neurologist appointment, the kids and babysitter, Ryan remarked, “you mean you’re going to be laying inside the MRI tube for an entire hour!? What are you going to do!?” It was a little funny to me since I’ve had long MRI’s before and it just seems normal now, so my response was “the same thing I always do! Grab onto a piece of scripture I’ve memorized and let my wandering thoughts settle on a truth to replay again and again in my mind and heart.”

Not that I do this perfectly. I want to be better at scripture memory. I go in and out of working hard at it or forgetting about it completely. However, I can tell you that those verses I memorized in 5th grade for Bible Drill are still stuck in my brain. I can tell you that if I didn’t have scripture memorized, that first really scary MRI when the specialist said “tumors can cause this kind of blindness in your eye. You need an MRI immediately” I would have been a mess. So it’s become a habit. Preparing for an MRI for me (if I know about it and have time to prepare) means making sure I have an arsenal of truth ready.

I need a rich soil to sink my roots deeper into while I lay still and someone takes photos of my future as the lesions in my spine and brain want to predict it. Whatever story demyelination and active or old lesions want to say, I have a better story. A story that begins and ends with King Jesus who is the ultimate Author of every story and holds me and those lesions and rogue white blood cells in His very capable and tender hands. It’s a story that must be recited to my mind and heart as often as possible through the truth of Scripture.

All that being said, I want to share these words I wrote to a sweet friend, who truly has no choice but to cling to Jesus with everything within her, recently as I gave her a bible marked with all my truth claiming passages. But I needed the reminder of my words and maybe you do to, so her are some of my words to her (and me & you)…..

As I marked and placed tabs on these specific verses just for you, I couldn’t help but think about how sometimes, you aren’t going to feel the truths in these passages, but claiming them as truth and speaking them loudly and clearly to your heart will be necessary. The Word must be preached to our hearts because our hearts will falter. There will be moments when the Word has be to spoken out loud and claimed as true, by you, and also those around you claiming and clinging to the truth for you, even when you can’t.

I have marked verses that lament; verses that cry for help; verses that shout God’s goodness, provision, and praise; verses that allow you to sit in the darkness and trust even when you can’t see….physically or spiritually. My prayer is that the eyes of your heart will be enlightened — that you may know, to the very depths of your being, the hope He has called you to, the fullness of the life He has for you, and the immeasurable greatness of His power.

May you know these things to, friend, as you read this. May you be stirred to sink your roots deep into the depths of His beauty, praise, goodness, glory and promise. Not because it’s a checklist, but because it’s a lifeline.

It’s the greatest story ever told and you, like me, will need to be reminded of the truest and best story as the world tries to write another one for us.

I am tearful, joyful, and convicted as I write this. I need to go get my arsenal of truth and beauty ready, calling my mind to action so that I can behold my Savior, the Author of my story, more fully and clearly. I hope you can too.

 

**I’ll share with you some of my favorites and some I’m working on right now in case you need some fresh ideas or want to join me in this work of abiding:

Psalm 16, 18, 23, 34, 62, 145; Isaiah 26:1-2, 40, 55; Jeremiah 17:5-10; Ephesians 1, 2:1-10, 3:14-2; Romans 8; John 15.

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