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

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

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 💜

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…

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

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 💜

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 💜

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. 💜

There’s a lot of new right now. And to be honest, it’s scary and overwhelming and emotional… but isn’t that the place where God shows up?

In the midst of all the new, we had our consultation with Harper’s new neurologist at CHOC. First, let me just brag on God here and say how blessed we were to get an appointment so quickly and easily! People come from all over to this epilepsy center seeking care, and the referral process can take FORever.

We left NC one month ago. And we’ve already had our first appointment. That is unheard of!

Back when we made the difficult decision to move Harper’s care from Duke to John’s Hopkins, I remember how astounded I was by the level of care we received- the knowledge, the questions asked, the research, the options… it was incredible.

This was even greater.

These doctors had already studied Harper’s charts and history, and knew what had worked and what had not. They had looked at her images and her scans and tests and were familiar with her case before even talking with us. They already knew things that should be done and had recommendations for us.

That brought both good and bad news, as is the usual rollercoaster we are accustomed to with Harps. Good news- she is stable. Her condition is not improving, but she hasn’t gotten significantly worse, we have decent seizure control, and she isn’t showing signs of severe regression. Also good news- there are new medications they have here that we haven’t tried, so more options for her, including a better, less invasive rescue med for us to carry.

The negatives- based on what they’ve seen in her charts, they feel her case is most likely a rare one in which her condition is being caused by structural and/or genetic issues, and therefore no long term cure. In other words, we keep treating the symptoms the best we can as long as we can, but there is the likelihood that treatment options will run out down the road.

Now, before I go any further, let me clarify… I type that out because that is what THEY say. That is the opposition we face regularly when it comes to Harper. And it is what we have been told since a week before she was born. We stand firm on the fact that it is NOT what our God says! He has shown that already. She has superseded everything the doctors have said since the start, and that is because of what God is doing in her. We fully believe He has great plans for her, and that her life is meant to bring glory to Him.

Now, back to the rest of the report… in order for the new team to determine the best course of action at this point, she has to undergo a LOT of testing. For the first time, she’ll have genetic testing done to see if there is an underlying cause to the malformations in her brain, which could give insight to further treatment options. She’ll also have a detailed MRI under sedation (we’re waiting for that to be scheduled), and then in November she’ll be admitted to the hospital for a weeklong EEG study during which they’ll wean her medications to induce seizures in order to gain a better understanding of what type she is still having and what parts of the brain are being affected at this stage. We are also working on a potential updated neuropsych evaluation, and getting set back up for all of her therapies.

So, a lot of new territory, yet the same in a sense as we’ve faced this before. We trust God’s plan and provision, and know that His plan for us includes providing care for our kids. He is good, and He is good at being God!

Hey y’all.

Can I still say that now that I no longer live in the southeast? I’m not quite sure, but I know that I apparently say a lot of things that people out here aren’t too familiar with. I stopped counting how many times a day I have to repeat or explain myself!

It’s been a hot minute since I’ve done an update here. Per the usual silence on the blog, I haven’t really known what to say or not to say or how to say it. One day a book will come with all of our misadventures and everyone will have a good laugh!

Nonetheless, we have arrived to what is now “home.” We had some grand adventures along the way and made some beautiful memories- and we had some huge, scare-the-pants-off-you challenges at the end that tested and stretched us in new ways. Let’s just say being stranded in the desert for five-six hours with your children (one with special medical needs) and no clue how you’re going to get out brings a new level to your prayers… and those prayers keep rolling when you finally get a ride in the dark with a not-so-friendly guy riding around with large, living bearded dragons hanging on his neck… and then more so when you load your family up in the not-repaired RV to travel through the night through the desert in the middle of insane storms into unknown territory.

But we made it. We have been here almost two weeks now in a temporary rental, without an actual AC unit in this house while temps outside have been anywhere from 100-116 degrees during the days. There are bugs and lizards and cacti. Everything is dirt and rock and it smells funny. There’s not much in the way of shopping or restaurants unless we drive an hour or so away.

Yet there is so much beauty here. We are surrounded by mountains and God paints these desert skies with the most beautiful colors every evening. It’s peaceful and quiet, and at night you can see stars like nowhere else on earth. The people here are friendly and welcoming, and the opportunities for sharing the love of Jesus are endless. There is so much work ahead in renovating the church building and starting new ministries, but we can see God’s vision so clearly for this place and it is so exciting to be a part of that.

For our family, this has also been a time of beauty as we have had to rely on one another like never before. This adventure is lonely and we are all homesick- but we have each other and this has created a bond that we could not have formed any other way. We have a more unified family vision and our pace has slowed down in a sense because we are all working toward a common goal together. I watch my girls play board games and color and do crafts, and we sit down for meals together and talk and run errands together as a family. There is laughter and conversation and a peace even though we feel so far from home and normal. As a mom, it has been a beautiful thing to witness, even when we are driving each other crazy from all the togetherness and lack of personal space!

Even Harper has handled the transitions fairly well so far. She has had her moments, of course, but overall she has been adjusting very well to the changes in routine and structure and environment. She had a final EEG at Duke on our way out of NC, which did not lend itself to the greatest results. Her last EEG had shown improvements on her latest treatment, so they increased the medications in hopes of seeing more improvement (or even diminishing the ESES altogether). However, that has not been the case, and despite the increase in treatment, her EEG seems to be declining again. It wasn’t drastically declined, but her percentages were slightly higher and she was showing some activity in both sides of her brain again instead of it being localized.

The good news is that they pushed in a referral to the epilepsy center at CHOC out here in California, and they have already reviewed everything and called us with an appointment next week! We are excited to have a new doctor look at her case and get new input on potential treatment plans, so we are hopeful that this will be a step forward for our girl.

One thing I have been learning is that this journey of life is crazy, and scary, and inconsistent, and full of twists and turns and uncertainties… but God is not. He is just as true today as He was in the beginning and as He will be tomorrow. He is good when circumstances are great and when they are rotten. He is faithful when I can see the beauty around and when I feel lost in the mess. He is our steady hand, our firm foundation, our solid rock. He is God.

Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love Him and keep His commandments, to a thousand generations… (Deuteronomy 7:9)