Difficult decisions

Decision making is not my greatest strength. (Just ask my husband when it comes to choosing a place to eat!)

I like for things to be clear and concise. I like to have all of the information I can possibly have to make an informed decision. I like to be aware of the potential outcomes and know exactly what to expect.

But every time I turn around, I find myself facing a mountain of unknowns, and I’ve spent the last ten years feeling like I have zero control.

Which is perhaps exactly the point… my lack of control is HIS complete control.

I’ve been faced with some rather large decisions recently, decisions that make me uncomfortable, decisions that scare me, decisions that don’t leave me feeling all warm and fuzzy inside. Hard choices that hurt to make.

And another one was given to me just this week… more medication changes for Harper. We maxed her out on her latest medication in hopes of bringing the ESES back under control, but unfortunately she is not tolerating it. For the last month she has had round-the-clock pain that is impacting her appetite, her mood, her energy, and her sleep.

We have tried everything we can possibly think of to alleviate the pain, but nothing is working… there are days she can’t make it through school because she’s hurting so much, and nights she can’t sleep for more than an hour or two at a time as the pain wakes her from her sleep. She is losing weight and losing interest in things she’s always enjoyed. We have been juggling schedules to accommodate her fatigue and feeling unwell, and at this point we are all exhausted.

So the neurologist has given us two potential medications to research, and we are (impatiently) awaiting a phone call to discuss the next step. It is taking us at least a week to receive a response each time we make contact with Duke, so the process is taking much longer than we would like.

In researching the medications offered at this stage, neither seems like a better option. The side effects are terrible. One of the meds isn’t typically recommended for children her age (used only as a last resort). The other poses potential interactions with another medicine she’s on. Both include a long list of negative effects that sound as awful (if not more so) as what she’s dealing with now… coordination issues, memory loss, vision problems, and potential blood disorders in addition to the fatigue, stomach troubles, headaches, and psychiatric impacts.

But we have to make a decision.

There is a lot of pressure in that. Sometimes it feels like we have to choose what misery to put our child through, and that is not a good feeling. While I know it isn’t my fault, it does bring a load of guilt knowing that whatever I choose will have negative connotations for my girl.

As we continue to pray and seek and research and ask questions, would you pray with us? Specifically, that the doctor will be more proactive and quick to respond; that we will choose the best possible option for her treatment; that if part of all of this is finding a new doctor/facility, those doors would fling wide open; and that her body will respond in a miraculous way, tolerating the meds and HEALING!

Looking forward to answered prayers 💜

All to purpose

My word for 2022 was “all.”

I remember the Lord placing that word on my heart at the start of the year, as we were in the midst of ministry in the desert of California, and I didn’t quite understand why. I focused on the fact that Christ is all, that He came for all, and that I needed to be all in for Him.

And then everything changed again.

My health was struggling, our girls were struggling, and just as quickly as God opened up the doors to send us to California, He opened the doors for us to return to the east coast. He moved fast and assuredly, and in no time at all we were right back where we started, trying to make sense of it all.

As we readjusted to life back home, He began to reveal a deeper meaning of that word “all” to me. Yes, I had trusted Him with it all when we moved from east to west back to east again. I trusted Him with it all when we looked for homes and careers and made school decisions for our kids. I trusted Him with it all when I was sick, then healthy, then sick, then healthy. I trusted Him with it all when Harper was having seizures and when her disease was in remission and when it came back again.

I trusted Him with it all as we sold another house and bought another house… as we lived with relatives… as one kid graduated high school and started college… as I had surgery again… as the middle kid embraced music and sports and became this whole new person… as my husband started a new career… as I went back to work full-time… as the third kid took on new therapies and new meds and even spent weeks walking around with casts on her legs.

But for me, “all” wasn’t just about trusting Him with it all. “All” was about seeing purpose in it all.

It was easy to see the purpose in full-time ministry in a “foreign” (to me) land. It was easy to see purpose in leaving everything that was comfortable to go into the unknown. It was easy to see purpose when doing the “big” things for God.

But what about when He sends you back home? What happens when you’re back to the everyday, normal mundane? When you aren’t doing “big” things with “big” titles in “big” places?

That’s where “all” takes on a new meaning.

Because He is still at work in all things… the bad stuff, the good stuff, and even the seemingly boring stuff.

He still is all we need… whether we’re living outside of anything comfortable or sitting cozy in the normal.

There is still a purpose in it all… the big jobs with influence and titles or the small stuff no one sees at home.

He still wants my all… regardless of where I’m living or working.

It all matters. Every word, every deed, every attitude, every lesson, every step… it all matters.

And as we close out 2022 and move into 2023, my word shifts from “all” to “purpose.” I’ve learned that it all matters, so now it’s time to look at why it all matters- what is the purpose of what I do, the purpose of how I spend my time, the purpose for the way I live my life? 2023 is about focusing on His purpose, doing things with purpose, and living on purpose.

Happy New Year…

Pray for it…

I struggled with the doctor’s report today. So much so that I didn’t want to share it, I didn’t want to talk to anyone, and I just wanted to be mad and sad and sit in a puddle of tears.

But tonight as Harper was getting tucked into bed, she once again spoke truth that I needed to hear.

She was telling her dad that something hurt- she gets regular random pains that we hear about but can’t fix, so her dad tried to distract her by joking around, and he dramatically asked, “Oh no, what are we going to do about it?!”

Harper was not in the mood for jokes or dramatics, so she responded in a very matter-of-fact manner: “Well, you’re supposed to pray for it!”

Oh, her unshakable faith. That’s her response to anything that ails her- as it should be mine. She wholeheartedly believes that asking God to make it better means it will be better.

And so tonight, I’m once again asking God to make it all better.

The report from the doctor today on the latest EEG was rough. Basically, the disease that steadily beats away at her brain is no longer in remission, but has come back with full force. She’s having continuous discharges, which prevents learning, causes regression and memory loss, contributes to behavioral issues, and disrupts sleep.

The concern is that once again her body has stopped responding to the medication that was working. She has a long history of this happening with anti-seizure meds. However, the hope is that maybe she just hit a growth spurt and needs a higher dose.

So, after discussing the side effects (namely, fatigue and severe stomach pain), the decision was made to max her out on this medication for the next two months if she can tolerate it and see if it makes any difference in seizure activity on the next EEG.

To further drive his point home, the doctor then informed me that at this point we are running short on options. She has an extensive list of failed medicines and treatments, and if they could find one more that she hasn’t rejected that would treat this particular disorder, we could add a third anti-seizure drug… but the chances of that happening and actually working are very, very low.

His next step would instead be looking into surgical options.

Hearing the doctor say they may want to cut my girl’s brain open again after being told the disease we thought was gone is instead back and as strong as ever was a little more than this mama’s heart could take today.

But then I heard her say, “Well, you’re supposed to pray for it!”

And so, instead of wallowing and crying and wondering why, I’m going to pray and believe He’ll make it better, just as my girl does 💜

Will you pray with me… for minimal medicine side effects, for no stomach pain, for seizure activity to cease, and for her cognitive function to be fully restored?

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen.

-Ephesians 3:20-21

Thankful

It’s been over a month since Harper’s last major seizure.

I’m thankful. However, the last month has brought significant changes. We began noticing a regression again… repetitive questions, confusion, needing more help in daily activities, and academic struggles. Her mood swings have been violent at times, and she fatigues so easily again. Some changes have been small while others have been bigger (such as certain academic skills suddenly being lost completely), and we’ve gone back to sleeping right next to her so we can monitor her more closely.

Just over a week ago we completed another in-home EEG study. A couple of days ago I received a copy of the report, but I haven’t been ready to share.

The last EEG was abnormal, but at a low percentage (spikes and waves less than 10% of the time). There was talk of decreasing meds because it was the best EEG she’s ever had. We were hopeful that she had outgrown the disease that had caused so much damage and regression.

This EEG was also abnormal, but at an alarmingly high percentage (over 90%). That means that although she isn’t have full-blown seizures, her brain is misfiring almost all the time again.

Not the news we wanted to hear.

We’ve only read the report, and still have a couple of weeks until we speak with the neurologist to see what exactly this means. One report says this is not ESES, while another makes no claims. We know these numbers can indicate a few different possibilities in terms of diagnosis, and looking those up will bring a mama to her knees. I know because I made that mistake and I saw the words such as cognitive deterioration, poor prognosis, and increased risk of SUDEP (Sudden Unexpected Death in Epilepsy), words that do not have a place in my girl’s story.

So, I am banning myself from Google, patiently waiting to see what the doctors propose next, and refusing to let fear and anxiety have a place at my table as we enter into Thanksgiving week. Instead, I will be thankful.

  • Thankful for every day I don’t witness a seizure.
  • Thankful for every morning ablaze with new mercies.
  • Thankful for life.
  • Thankful for the sound of my child’s voice.
  • Thankful for every hug she has to give.
  • Thankful I get to answer her questions, even when they get asked over and over.
  • Thankful for her extended innocence.
  • Thankful for laughter.
  • Thankful that I get to hold her hand one more day.
  • Thankful for her strength and courage.
  • Thankful for her joy that overflows.
  • Thankful for the One who holds her future.
  • Thankful for hope.

O give thanks to the Lord, for He is good; for His steadfast love endures forever. -1 Chronicles 16:34

Raised to new life…

Almost ten years ago I was told this girl probably would not live- and if she did, she would have no quality of life.

Today she shut Satan up and showed the world what quality of life she’s walking in… her walk may not be an easy one, but she knows Who she trusts to get her through 💜

Dangerous comfort zones…

Comfortable.

I love to be comfortable. It’s warm and cozy and inviting. It beckons me to come in and stay a while, to let down my guard and embrace a sense of security and peace… all too often, a false sense of security and peace.

We got comfortable these last six to eight months. The Lord led us back to the east coast, we easily fell back into our routines, we’ve been surrounded by family and friends, and Harper has been doing amazingly well.

I let my guard down. I began to feel this feeling I had not felt in ages- normalcy. And I liked it! It felt good to participate in regular activities, to move forward, to not worry every minute of the day, to sleep at night without listening for Harper’s breathing and movement. Comfortable.

But there’s danger when we get too comfortable. We can slip into a place of complacency, becoming unaware of risks and looming dangers. We focus so much on what feels good in the place of comfort, forgetting that we have an enemy lurking around, waiting for a chance to hit where it hurts.

He hit me where it hurts this morning. Harper has developed a habit of waking in the middle of the night every night and crawling in bed with me. And to be honest, with her history, I allow it. She needs her rest and I need mine, so if that’s what it takes, that’s what we do!

This morning was no different, but then around 4:30, her moving around in the bed woke me. I tried to ignore it, thinking she was just trying to get closer, and I rolled over to go back to sleep.

However, after a few minutes I realized she was still moving, and I began to recognize that dreaded rhythmic motion. Within seconds all the lights were on and we were running a timer and monitoring her heart rate and oxygen levels, coaching her to breathe.

We have not seen a seizure like this in ages. The last visible seizure she had was almost eight months ago, and while it was rough and scary, it paled in comparison to this series of seizures this morning.

It took a couple of hours for her body to calm down, for the tremors and the vomiting to stop, for her to be able to focus her eyes and use her hands and speak complete thoughts without slurring. She’s battled headaches and fatigue all day, and is barely eating.

We got too comfortable. We were completely unsuspecting, and the unexpected rocked our world, knocking our feet out from under us. It hurt.

As I’ve been thinking all day of what I could have or should have done differently as her mom, I’ve also been reminded of the dangers of getting too comfortable spiritually. How often do we become complacent in our walk with Christ, just coasting and relaxing in unawareness, not moving forward into where He is calling us because it just feels good to sit where we are? Comfort zones are dangerous places.

As 1 Peter 5:8 says, “Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour.” We must be aware! There is an enemy waiting for us to let our guards down so he can come in for the attack, and when it happens, it hurts.

Friends, stay vigilant. Enjoy the peace that is experienced in His presence, but don’t grow complacent. Let Him comfort you as only He can do, but don’t set up camp in your comfort zone. Be aware, be obedient, be ready, and follow His leading outside of your comfort zone.

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