Longing…

It was one of those days. You know, the days in which you are annoyed by every little thing… the sound of your name being called yet again, the hundredth spill on the floor, the pile of laundry that keeps growing, the dirty dishes in the sink, the way someone looks at you, the rain that keeps falling, the bills that demand payment, the sound of someone breathing. And you’re so cranky that you’re annoyed by your own self.

Anyone able to relate? No? Just me?

Well, it was that kind of day for me. Nothing made me happy. I snapped at everyone for no reason at all. How dare someone offer to help me or ask me what’s wrong! I read my Bible, I exercised, I cooked and ate, I finished a couple of home projects, I went outside, I read a book, I listed to music… and I was still a massive grump. I longed for something different, but I didn’t know what it was I was longing for.

By the end of the day I was over myself, and I began to rant and rave to the Lord, attempting to justify all the reasons I was irritable.

And then I caught myself amused at my frustration as a thought crossed my mind:

“Aren’t these the things you once prayed for?”

A home of my own. A family of my own. The time and ability to tend to the needs of my family. All of my children home under one roof. Healthy, active children. A husband who is around and dedicated to his family. Time together.

The very things I had prayed for, the things I had longed for, had now become annoyances as my longings shifted. Instead of being content in the moment, grateful for the signs of answered prayers all around, and thankful for the time I had been given, I was longing for something else, something different.

In my typical fashion, I then began to berate myself for being discontented, for not being satisfied, for longing for more, and I had a revelation of sorts…

The problem isn’t the longing itself- it’s what I’m longing for.

So often I feel guilty for longing after anything. But the very God who created me instilled in me a longing for more, a longing for bigger, a longing for better…

A longing for HIM.

The truth is that nothing in this world will satisfy the longings of my heart. Nothing on earth will bring true contentment. My soul cannot be satisfied by earthly things. No matter what I have or don’t have, I will always long for more, because HE is more.

So when my soul is unsettled and the longings come, I need to press in. I need to dig deeper. I need to sit at the feet of Jesus and allow Him to fill the voids I think I have. He alone can fulfill the longings of my heart.

Let’s long for Him this week, friends 💜

Nevertheless, I am continually with you; you hold my right hand. You guide me with your counsel, and afterward you will receive me to glory. Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

– Psalm 73:23-26

Hopeful…

My last post was on waiting.

And yet still, we wait.

Such it is with this life… we’re always waiting on something! After I last updated, we received word back from Harper’s neurologist at Duke that her EEG was clear.

She has not had a clear EEG in over seven years. In fact, I initially thought the report I read had to be wrong, and we had to wait a month to confirm everything with the doctor.

For the first time ever, her body is responding to the medicines as it should. After years of failed attempts, the doctors at CHOC hospital in California found something that worked.

Even when we don’t see it, He’s working.

Now we wait until next month to do a follow up EEG, and if the prognosis is still good, we get to start weaning back on one of her daily meds.

Weaning BACK! And doing so without adding something new! We’ve never done this!

So our prayers are shifting… we are now praying for this next EEG to be clear. We are praying that she does get to wean off the medicine and that it goes smoothly. And we are praying that the damage that has been done to her brain over these years will be reversed and she will be fully restored.

We are hopeful… but we always have been. Because our hope is not in doctors or man, but in Jesus. We have a Living Hope who works all things for the good of those who love Him, and that Hope does not fail.

Does that mean we get everything we ask for, the way we expect it, when we want it?

No!

But it means we can rest and have peace and joy no matter what, because we know our Hope does not disappoint, that He is holding all things together, and that the end of our story is victory, regardless of what happens here on earth.

So, friends, whatever it is you’re waiting for today, keep praying, keep trusting, and hold on to Hope… the best is yet to come 💜

Wait

There’s been a lot of speculation as to why our family moved back to the east coast after such a short time in the desert. To be honest, we questioned it a lot as well. We loved what we were doing and we had plans for so much more.

But as Proverbs 19:21 goes, “Many are the plans in a man’s heart, but it is the LORD’s purpose that prevails.”

The girl that keeps us on our toes has continued to keep us on our toes. While the move to California opened the door for her to see a new specialist and get new testing, her needs continued to increase and our remote location in the desert prevented us from getting the day to day care she needs. Resources were just not readily available. In addition, I was having health issues and struggling to find healthcare, Kirby was having to be away from the church more than he wanted, and we were trying to find balance with our oldest girls and homeschooling as well with the support and help of our family thousands of miles away.

And then suddenly God surprised us and threw the doors back home wide open, as only He can do. We weren’t looking for it, and I argued quite a bit about it. Ministry was going great, we were learning so much, and we had already built lifelong relationships. But within weeks every little detail was taken care of, from job opportunities to the selling and purchasing of homes to travel plans to medical appointments. God made it clear that seasons were changing.

So here we are.

While it has been sad to shift seasons yet again, and to do it so quickly, I can see the reasons for it. The day before I left I received the results of one of Harper’s latest tests, indicating that her seizure activity is having tremendous impacts on her brain development. We have even more therapies and interventions to implement and she has a lot of hard work ahead of her. However, the doctor informed us that all of that is for naught if they don’t get better seizure control.

So everyone’s goal right now is seizure control, but her seizure activity is increasing. We’ve known that she was having constant activity in her sleep, but now that’s causing her to sleep less and less. She was having absence seizures while awake, but in the last week she’s had three more pronounced seizures while awake. She just finished another EEG study at Duke, so we’re waiting for the doctors to review the data and tell us what step is next.

Waiting.

That’s not my favorite place to be, yet here we are in the throes of waiting. Waiting in line at the store or the gas pump. Waiting at the stoplight. Waiting in yet another medical waiting room. Waiting for the doctors to report back. Waiting for my husband to make his way here. Waiting for our belongings to arrive from across the country. Waiting for a home to be ready. Waiting to see what happens next in this scary, broken world. Waiting for prayers to be answered.

But there’s purpose in the waiting. There’s comfort in the waiting. There’s worship in the waiting. There’s strengthening in the waiting. There’s growth in the waiting. There’s Presence in the waiting. HE is in the waiting.

Whatever you’re waiting for today, know that He is there with you.

Wait for the Lord; be strong and take heart and wait for the Lord. 
-Psalm 27:14
The Lord is good to those who wait for Him, to the soul who seeks Him.
-Lamentations 3:25
But as for me, I will look to the Lord. I will wait for the God of my salvation; my God will hear me.
-Micah 7:7
I wait for the Lord, my whole being waits, and in His word I put my hope.
-Psalm 130:5
But they that wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
-Isaiah 40:31

Persist

Another day, another doctor…
As time has gone on, I realize I share less and less about what goes on behind the scenes with this girl. I think partly because we’re tired, and partly because it seems that we shouldn’t still have things going on after almost 9 years of this journey.

But the truth is, we’re still dealing with things. It’s still hard. We force her to take meds twice a day as she complains about the number of pills she has to swallow each time. We don’t get a lot of sleep as she battles seizure activity in her dreams and comes to find us on the wee hours of the morning when she just can’t find rest anymore. We still spend our days balancing doctor visits, therapy appointments, and medical-related phone calls and emails. Her memory is still shot and schooling is a daily repetition of basic concepts she just cannot remember. And the older she gets, the more emotional and anxious she is about all of the tests and procedures…the more aware she is about what’s going on and the more it breaks my heart to listen to her cries and questions.

Just last night I watched her fight away tears and muster up bravery to get an IV, but then break down screaming for me in the MRI machine until they had to give up and call it quits.

As a parent, it all starts to feel a bit like you’ve failed in some way. You take one step forward and get knocked three steps back and you wonder what in the world you’re doing wrong?

But then you watch this very same kid hop out of bed full of life and joy first thing in the morning. She grabs her trusty bear and bounces out the door for another day of testing without a second thought. She talks through her worries, expresses her feelings, but keeps on keeping on. She persists.

And so that’s what we do… we persist. Yes, it’s not always easy. In fact, it rarely is. Yes, we are weary. Yes, it just doesn’t seem fair. Yes, the options are few. Yes, we know the odds are not exactly in our favor.

But yes, we know our God is great and His plans are for good, and His strength is made perfect in our weakness. We know He never runs out of options and His plan isn’t contingent on our circumstances. So we persist.

Therefore do not throw away your confidence, which has a great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised… But we are not of those who shrink back and are destroyed, but of those who have faith and preserve their souls.
Hebrews 10:35-36,39

And the 2022 word of the year is…

I wasn’t feeling confident about my word for 2022.

I usually go into the new year with an idea or two about what my word of the year will be. It isn’t usually a surprise and typically is a word I’ve seen popping up here and there in the weeks leading to January 1.

But this year I had nothing.

So I was trying to force words, wanting something great and profound, something that sounds really intelligent and wise, and I sat down this morning with my Bible and a list of great words with great meanings and began to pray and seek…

And the Lord erased my list.

Nope. No nice, fancy word this year. No deep, profound meaning. No extensive vocabulary lesson or hidden meaning.

Instead, He gave me three letters.

ALL.

See, it turns out the Bible has quite a bit to say about all… how Jesus is all, how God created all, how all things are in His hands, how He came for all, how all is by Him and for Him, how He is all we need, how He wants our all…

He’s not a “some” kind of God. He’s not a “partial” or “just a little bit” kind of God. He’s not a “whatever you feel like giving me” kind of God. He’s an ALL kind of God.

And He knows when we’re holding back. He knows when we’ve surrendered most of the things but we’re still holding on to that one thing over there in the corner. He knows when we’re trusting Him with that big stuff, but we’re still trying to control the small stuff. He knows when we’re praying over all of that but not talking to Him about this. He knows when we’re going through the motions but our hearts are not in check. He knows the thoughts, He knows the feelings, He knows the desires, He knows the attitudes… He knows.

So this is the year of all. All is not easy. All is surrender. It is recognizing all that I lack without Him and accepting all that He is. It is letting go of all my own wants and desires and embracing His plans. It is relinquishing all false sense of control to clasp hands with the One who has all control.

All is commitment. It is whole heart, whole mind, whole soul. It is knowing when to say yes and when to say no so that those yeses can be all in. It is being present in the moment. It is loving like Jesus and serving with gratitude. It is realizing that every single task of the day is for the glory of God.

Here’s to being all in in 2022 💜

Back to “Abide”

2021 is just about done.

I don’t know about you, but I’m just about ready! It has been quite a year. If I could sum up this year with one word, I think I would go with “unexpected.” There has been a lot of unexpected in this past year.

But when I kicked off 2021, the Lord laid the word “abide” on my heart. I had in my mind what that was going to look like. It was going to be a year of slowing down and really resting in the presence of God, of being more intentional in my prayer life, of soaking up time with Him. I had it all mapped out on my timeline with my agenda, neat and tidy and perfectly planned out.

Ha.

Then came a crazy cancer scare. Three surgeries back to back and complications with those. Failed treatments for my baby girl. God calling us to full time ministry and moving us cross-country. More health issues that have knocked me off my feet. New diagnoses for Harper. Homesickness and emotional heaviness and homeschooling and teenagers and middle school and senior year and college preparations.

That picture perfect abiding didn’t quite pan out like I thought.

But… does it ever?

In the midst of it all, I realize that there has been a deeper abiding taking place.

Abiding that involves enduring… withstanding… submitting.

Abiding that means remaining no matter what.

Abiding that is continuing steadfastly, knowing I’m in the shadow of the wings of the Almighty.

Because in the face of everything that tries to break us, we all have a choice to make. We can choose to crumble under the pressure, or to abide in the presence. And, while it took me all year to figure it out, this year of trial has been a process of the Lord molding and shaping and reaching and bringing me to new places of broken abiding.

Now let’s see what He has next 💜

‘Tis the Season

‘Tis the season…

The season of celebrations… of parties… of gathering with friends and family… of visiting relatives… of giving gifts and sharing time… of love and laughter and togetherness.

For our family, it has always been a season of busyness and excitement as we rush from event to event, filling every minute with activity, the calendar overflowing with bustle. There was baking and decorating and shopping and dressing up for this and that. Every weekend was booked and the days between, too.

But this season has been a season of different. We’re almost 2,500 miles from home, from family and friends, from comfort and traditions, from everything we’ve always known. We are homeschooling, so no class parties and school plays this year. Our church is small and new, so not the big fanfare we’ve been a part of in the past. We’re in a small, remote area, so most of the events and activities we’ve always done don’t quite work here. Even shopping for gifts has been hard and finding ingredients for favorite recipes is a challenge.

Honestly, it just hasn’t felt like Christmas.

I’m not going to lie- it has led to a lot of tears and heartache. I have felt a lot of big feelings and had some hard conversations with the Lord. (And let me tell you, I sure am thankful that He can make sense of my messy babbling and has the patience to handle my emotional baggage!). I’ve done very little decorating, very little gifting, subpar wrapping, and have not put much effort into making a “magical” Christmas around the house for the kids… all of which have compounded guilt on top of the hard feelings. It’s a vicious cycle!

But at the end of the day, past the hard feelings and emotions and crying and my own expectations of what I think the Christmas season is supposed to look like, there has been a lesson for me.

It is still Christmas.

In spite of my thoughts and feelings and lack of preparation, Christmas has come. Just as it did on that first Christmas night when so many were unprepared and unaccepting and just not ready.

Because Christmas isn’t about us. It isn’t about my comfort. It isn’t about my traditions and my desires. It isn’t about the events and activities and busyness. It isn’t about the performances and parties, the meals and desserts, the gifts and wrappings and bows.

Now, before I offend anyone, don’t misunderstand me- those things are great! Of course we can have all the fanfare and celebration- as long as we remember what the fanfare and celebration is for.

But the bottom line is that if we stripped all the shiny away, it would still be Christmas.

No, Christmas isn’t about us- it is for us. It is the coming of the Savior to a broken and tired world that needs Him so desperately.

And nothing can change that.

For to us a child is born, to us a Son is given, and the government will be on His shoulders. And He will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of His government and peace there will be no end.

-Isaiah 9:6

Abide in Hope

There are specific points I have questioned just how many times one’s heart can break. How many times can it shatter? Does it ever reach a point where it crushes beyond repair? Or does the heart ever become immune to the beating so that the hits no longer hurt?

Yesterday as I sat alone in the hospital room at my daughter’s bedside, eagerly awaiting the latest updates from the doctor, I longed to be past the point of hurt when they dropped the bombs of bad news on me. “We know her percentages were previously thought to be at 80% and you were hopeful that it would be even lower, but she is at 100%.”

100%. Sleeping and waking. Full progression of the disorder that rips away at her brain. The loads of medication we have been pumping into her body to try to halt the disease have done absolutely nothing but wreak havoc on her body.

But they didn’t stop there. In addition, she also has developed a new type of seizure, called absence seizures. She’s having them steadily throughout the day, which means she is constantly in and out of consciousness and we don’t even realize it. They can be just a couple of seconds long to minutes long at a time, and during that time she has no idea of what is happening around her. These are coming constantly. This significantly impacts her cognitive development, making memory and learning even more difficult than it already was, and also explains the issues with moods and emotions we’ve been seeing lately.

We were sent home with a plan for now of weaning off of the Valium over the next month, prepared for the withdrawal effects that will bring. We will also at the same time titrate up to a high dose of a new medication to target those absence seizures, which has it’s own long list of negative side effects. We reconvene after the start of the year to determine if her body accepts or rejects this new medicine.

This morning I hit my knees in tears and prayer, longing for answers and comfort for the brokenheartedness I felt once more. I was reminded of my one word of the year that the Lord placed on my heart back in January- abide. I can choose to abide in my sorrow and hurt, or I can choose to abide in hope. And for me, my hope isn’t just a concept. My hope is alive, it’s a person, it is Jesus Christ.

So I washed my face and joined my family for a morning in the sun, hiking and taking in God’s creation. I watched my miracle girl bound up and down the paths and listened to her squeals of delight over all the “amazing” discoveries she was making about the world, and I scoffed at the doctor’s words in my head that we “must improve her quality of life.”

Yes, I know that things could be better for Harper. I know that living with your brain constantly misfiring and not knowing what is happening and struggling to remember and learn and feeling out of control is less than ideal. And I will give every thing I have to continue to fight for her and make sure she has the best care. I will travel the world over to find the best options for her, and I will continue to pray over every cell in her body until her healing comes.

But improving her quality of life? She doesn’t need my help on that one. She knows her purpose. She knows Who made her. She lives to worship and exalt Him. And I have yet to meet another person with more joy! I think we could all learn a thing or two about life from her.

So, we press on. My heart may break a zillion times, but “The Lord is near to the brokenhearted and saves the crushed in spirit.” (Psalm 34:18) That’s the beauty of abiding in Hope 💜

EMU Preparations

Life cruises along and all seems normal and I almost forget that our normal isn’t so normal.

And then we have weeks like this last week that thrust me back into reality.

First, a long-awaited test result from Harper’s new doctor that indicate possible genetic “glitches” that could potentially explain her condition if they knew more, but at this point are inconclusive and just leave more questions than answers.

Then it was the public meltdown she had, although not necessarily the meltdown itself, as those have been coming more frequently lately. Rather it was the realization of the pointing and staring and comments of those around us that hurt my heart… it has been a long while since we have been blatantly scoffed at and mocked over a sensory overload meltdown (which looks like a big kid throwing a massive tantrum in our case), and it truly caught me off-guard. Sometimes the cruelty of this world just baffles me.

And finally it was preparing for an extended hospital stay for EEG monitoring (an EMU admission)… I spent hours printing off reports that didn’t get transferred, finding copies of neuropsych evaluations, and putting it all in order. As I did so, I was struck by the pages and pages of numbers and scores that try to define my child. All of those digits that are used to quantify who she is or what she is capable of, yet they fail to take into account one thing- the God who has created her and who defies all of man’s reasoning and supersedes our understanding!

I packed and repacked and repacked our suitcase, trying to be sure we had all of the comfy clothes, books, games, and snacks we could need for the next week. This will be our third stay for this testing, and each one has been different. The first was at Duke and ended badly with Harps in ICU, and the second was a 9-day stay at Johns Hopkins. This time we will be in Los Angeles, and it will just be Harper and myself for the entire stay for the first time. New city, new hospital, new doctors, new experience…

I’ll do my best to keep everyone posted on what’s happening over the next week, and as far as praying goes, here are some specifics: pray for clear communication with the new doctors, safe travels as we drive to LA, easy IV access, calm nerves and joyful spirit for Harps, slow and easy (and safe) weaning process off of her meds, conclusive data for the doctors, and peace and patience for this mama as I watch these people try to make my baby have seizures!

As always, thank you all for praying and being a part of our journey 💜

Who is Jesus?

I don’t like for things to not be fair. I don’t like for people to hurt. I don’t like sickness and death. I don’t like sorrow and despair. I don’t like confusion and chaos. I don’t like fear and anxiety. I don’t like the dark and the unknown.

No one does, right?

Yet our world is full of it. Every day we wake up to something else heart wrenching or terrifying that we just can’t comprehend. We are bombarded with darkness at every turn, and it can be easy to feel overwhelmed and even hopeless at times.

This morning was one of those mornings where my heart was so heavy with those feelings of not understanding, of confusion and sadness and anger at situations that just seem so unfair. The question, “Why?” was the only one I could ask.

Fortunately, God doesn’t scare easy and He was well prepared for my big feelings this morning.

Once I unloaded all my heavy on Him, I picked up my reading in Colossians, which we are working through at church right now. And He led me to verses 15-20, revealing all of those characteristics of Christ, reminding me of who He is no matter what.

Who is Jesus?

He is the image of the invisible God.

He is the firstborn over ALL creation.

He is the creator of EVERYthing in heaven and on earth.

He is authority over all… the good, the bad, and everything in between.

He is before all things… regardless of what man thinks it feels.

He holds it all together… even when we think it’s falling apart.

He is the head of the church body.

He is the beginning.

He is the fullness of God.

He is the reconciler… even when it makes no sense and there seems to be no logical way.

He is the peacemaker… despite every war waged against us.

Now those words may not take away the pain. They may not even take away the wondering. But they point me to the truth of His character that cannot be changed by circumstances. They remind me that even when I can’t see it, He’s working. They remind me that even if not, He is good. They remind me that I don’t have to understand what He’s doing to trust Him. They remind me that He is working all things for the good of those who love Him. They remind me that His ways are not our ways, and that what He has for us is far greater than anything we can imagine. They remind me that in Him is the ultimate victory. And they remind me once again of the power and authority that is in the very name of Jesus.

Some days we just need to speak the name of Jesus- and remind ourselves of who He is. 💜