We’ve witnessed a miracle.

I don’t have eloquent words, just overwhelming gratitude and the need to shout it from the rooftops, so here it is.

Most of you know our story- the Lord rescued our marriage, then continued to demonstrate His power as our newborn baby defied all odds and lived in spite of multiple diagnoses that intended to take her life.

And now for the last nine years, we’ve watched as she’s been plagued with seizure disorders that have threatened her life and stolen her childhood. She’s grown up bouncing between hospital stays, doctor’s visits, and therapy appointments, battling the unpleasant side effects of loads of medications.

And we have prayed. And prayed. And prayed some more.

After nine years, we had our first clear EEG.

So we spent last week in the hospital as the doctors tried to prove that it was a fluke. Because with all of the brain damage and cysts and fluid in this girl’s head and nine years of constant spikes and seizure activity, a clear EEG makes no sense.

We left a week later on one less medication and a still clear EEG… even when they weaned her meds, there were very few abnormalities, and the one seizure they triggered was NOTHING compared to the seizures she’s had in the past- she never lost consciousness, never convulsed, never lost oxygen.

Nothing short of a miracle.

Now, don’t get me wrong- we’re still praying for healing. There are still struggles. There are still big diagnoses, still treatments, still work to be done.

But we can’t let that undermine the miracle of this moment. God is still working- He’s not done yet. This is just the beginning.

So to those of you who have been praying for years, who are clinging to a promise, who are waiting and waiting and waiting- don’t lose hope. Just because you haven’t seen it yet doesn’t mean you won’t. Just because it makes no sense doesn’t mean it won’t happen. Just because the wait is long doesn’t mean it’s not worth it.

He is doing something. He is working in the waiting. He is faithful to complete it.

We’re still believing. We’re still hoping. We’re ready for more.

We’ve witnessed it.

I pray that the eyes of your heart may be enlightened so that you may know what is the hope of His calling…
-Ephesians 1:18a

Hope. That unseen thing we cling to so desperately.

The Merriam-Webster dictionary describes it as implying “little certainty” but instead suggesting “confidence or assurance” in possibility.

Possibility in the impossibility is what our God is all about.

I’ve been wrestling with that lately as we’ve been reminded of diagnoses previously given for our girl, and then handed new labels. Diagnoses such as porencephalic cyst, multiple unchanged cysts, and severe cystic encephalomalacia… all of which lend themselves to a poor prognosis. Seemingly hopeless, but here we are, eleven years later, still clinging to hope and seeing miracles.

Then, most recently, the latest test results and diagnoses that gave hope and ripped it away at the same time. A normal EEG, indicating resolution of the ESES that’s been a part of our battle for so long… but then leading doctors to declare that the damage done to Harper’s brain has been permanent as they’ve officially labeled her developmentally delayed and intellectually disabled.

We’ve seen all the test results; we’ve been following the trend for years; and we’ve been given subtle warnings by doctors since her birth. But somehow seeing those words in black-and-white on her records is a gut punch nothing quite prepares you for. From the doctor’s point of view, it’s the final word. They’re done with looking for change, done with optimistic outlooks, and have essentially lost hope that it will ever be different.

But I remembered today that this is why my hope is built on nothing less. My hope cannot be in test results and doctors reports and diagnoses. My hope cannot be built on what I think should be, and what I want to happen. My hope cannot be in the mere words of man and labels and descriptions. My hope cannot be in medications and doctors and experts.

My hope is Jesus alone.

I haven’t quite known what to do with this big, official diagnosis. On the one hand it seems to change everything; yet in reality it changes absolutely nothing.

Will we change the way we approach things? No.

Will we change our efforts to raise our daughter to be who God has called her to be? No.

Will we lower our expectations? No.

Will we stop believing for more? No.

Will we stop praying, stop moving, stop trusting, stop hoping? Absolutely not.

Whatever future lies ahead, our hope remains the same, for our hope is the One who never changes.

Eleven years ago today my life got flipped upside down.

It wasn’t the birth of my third child, although that was merely days away and we didn’t know.

Rather, it was the moment I realized I had taken everything for granted… the moment I realized that life and good health are not guaranteed… the moment I realized nothing in my life would ever be the same again… the moment faith became more than just something we talked about, when Hope became our lifeline, and when prayers became true gut-wrenching cries.

It was a lifetime ago, but still so fresh in my memory… walking into the doctor’s office so nonchalantly, having no idea of the nightmare that was about to become reality. Driving myself to the hospital, in complete denial that anything was actually wrong. The doctor sitting at the foot of my bed with tears in her eyes, saying words I could not comprehend. I remember staring at that white blanket pulled across my big belly, feeling the tears pouring down my face, but unable to speak or move.

Hydrocephalus. Very little brain matter. No midline. We don’t know what happened. We can’t explain it. Very little chance of survival.

The days that followed were days I wouldn’t wish on anyone. I walked around in a fog, the doctor’s words drowning out the Voice of Truth. We were given worse-case scenarios, told to prepare for the inevitable, and I felt as if I had a ticking time bomb in my womb.

“Even if she survives, she’ll have no quality of life.”

Those words shook me to my core. They hurt my heart and made me question everything I thought I knew. They robbed me of peace. They wrecked me.

But God. I learned quickly that He doesn’t leave us in the pit of despair. He meets us there, wipes our tears, and holds us close. Even when it makes no sense, He’s working all things out in His perfect timing.

And here we are, eleven years later, still defying the odds and proving doctors wrong. Because that’s what our God does.

Life is not easy, and it’s far from perfect. It’s been eleven years of ups and downs, of crying and praying, of hoping and waiting. But it’s also been full of joy and love, full of beauty from ashes, full of celebrating the small things and giving thanks… and, dare I say, full of quality. God has a way of bringing a quality of life doctors can’t explain.

Every milestone met has been a celebration of the goodness of God. Every year we get to light the candles on the birthday cake is a testament to His victory. And while this week stirs up all the emotion in this mama’s heart as I remember the pain and all that was lost, it also serves as a reminder to live in gratitude, to appreciate every moment, and to keep fighting and believing that the best is yet to come.

I am certain that I will see the Lord’s goodness in the land of the living. Wait for the Lord; be strong, and let your heart be courageous. Wait for the Lord. (Psalm 27:13-14)

I have procrastinated with writing this. Even now as I type, my fingers are slow-moving and the words just don’t seem to be flowing.

Nothing is working.

That’s the bottom line of every report we get these days. First was the neuropsych evaluation, which showed better attention but not better cognitive function or memory. Then we had the EEG report which showed no improvement at all despite the new treatment and loads of medications. Her brain is still constantly misfiring. And the casts Harper has been wearing for the past month to help muscle tone and range of motion have been ineffective this time. We’ve had massive mood swings and more and more spells of being dazed and confused, likely related to seizure activity or possible absence seizures. Her body continues to grow but her mind doesn’t keep up, and it becomes harder and harder to find a place where she fits.

Nothing is working.

Yet we know GOD is still working.

I was reminded of that truth just a few days ago. Harper urgently told me she needed to tell me something, something that was going to amaze me and I would love it. (In moments like these, she tends to get very animated and enthusiastic). Of course, I was all ears- who doesn’t want to hear something amazing?

She proceeded to tell me that she had been sitting in her room by herself and was just talking to God, telling Him “all the things.” She told me she was sitting down on the floor (of course she had to describe the exact spot on the floor to me in great detail) and that God told her, “Get up off the floor, Harper, and go tell your testimony.”

She was so excited, talking circles around me, explaining every detail to me, and finally said, “Mom, isn’t that amazing? God has given me a testimony!”

Yes, He has.

I don’t pretend for a second to have any of this figured out. We have prayed over this girl for over ten years now. We have traveled the country to get her the best doctors we can find. We go to dozens upon dozens of appointments a month to try whatever may help. We have gone through countless medications and treatments that have let us down time and time again.

But God hasn’t let us down. He has continued to orchestrate every detail of her life, leading us to new opportunities when the road seems to end, pulling us out of the pit of despair when the reports are once again bleak, and reminding us that our circumstances do not change His goodness. He pushes us to “get up off the floor and go tell.” He is writing Harper’s story as only He can do, and she never doubts His goodness.

We appreciate your prayers as we are moving forward with new treatments and medications, but as we enter this week of thanksgiving, we ask that you not just offer prayers of petition on Harper’s behalf, but also prayers of praise for all that He has done, is doing, and will continue to do… He is GOOD.

“I will extol the LORD at all times; His praise will always be on my lips. I will glory in the LORD; let the afflicted hear and rejoice. Glorify the LORD with me; let us exalt His name forever.”
-Psalm 34:1-3

“God is enough.”

That one sentence caught my eye on social media as I was scrolling through aimlessly, waiting for Harper’s next appointment. I scrolled past, but found myself going back to it, staring at the words.

“God is enough.”

It hit me. Hard.

We had just finished the day’s first appointment, an appointment with neuropsychology to do some follow-up testing. They had done some repeat testing to see if Harper made any cognitive gains after being on this new medication for just over a month. While it will take time to get the full report, the doctor pulled me in to discuss what she knows thus far.

Harper made great gains in her attention and focus. Over the years this has fluctuated, and some doctors have pushed for ADHD medications, but with Harper, it’s all related to her seizure activity and medication side effects, so we’ve never gone that route. Today hearing that her attention has diagnostically improved was a huge gain for us.

However, that was pretty much it in terms of improvements. Her recall, comprehension, and math skills, among other things, are all still not where they need to be, so the doctor spoke to me about adjusting our approach to her learning. This has been mentioned to me a couple of times in the last year, and today was a bit more direct. Basically, there are areas that seem to not be improving and things they don’t think she will be able to learn.

At this point, the recommendation is to start focusing more on life skills rather than a traditional curriculum approach. Up to now, we’ve always pushed Harper to learn what other kids her age are learning in school with hopes that we’d be able to give her enough scaffolding and assistance to eventually get it.

But in the last year or so, it has become more of a frustration for her and for us as she struggles to understand and we work through some of the same exact things day after day as if she’s never seen it before. It would get discouraging at times, but I always held on to the hope that it would eventually click and stick. It never occurred to me that it wouldn’t.

So today was a bit of a gut-punch. On the one hand, I know I should feel some relief in knowing that it’s not just us, that she really is unable to learn some of these things. And relief that we can stop putting so much emphasis on that and focus more on areas that will bring her success.

But, then there’s the other hand. The one that knows they’re saying that at ten years old, this could be about as far as we get. That despite our efforts, she’s not going to catch up to everyone else her age. That although we know God has a plan and a purpose for her, her future is probably not going to look like what one would hope for a “normal,” neuro-typical child. There may not be driving and dating and graduating and going off to college and getting married. It’s going to look different.

But… “God is enough.”

God is enough when everything is different.

God is enough when you don’t get the results you’re hoping for.

God is enough when the improvements aren’t enough.

God is enough when you’re in unchartered waters.

God is enough when your child just can’t get to that next place.

God is enough when you just can’t fix it.

God is enough when your heart hurts.

God is enough when your own strength is not enough.

God is enough when your own wisdom is not enough.

God is enough when your own efforts are not enough.

I’ve had to remind myself of that today. Regardless of what happens today, tomorrow, or ten years from now, He is enough. Regardless of how strong my emotions are or what words anyone has to say to me, He is enough. Regardless of changing directions and shifting dreams, He is enough. He is all I need. He is all my daughter needs. He is all any of us need.

Harper will complete an overnight EEG tonight and we wait to see what those results show in terms of the effectiveness of her current regimen. Most likely we will continue on this treatment plan for about five more months, then reevaluate as this current treatment loses effectiveness at the six-month mark and can’t be continued beyond that. This either fixes things and we wean off at that point, or it doesn’t and we look for another plan.

Either way, God is enough.

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

I woke up this morning in a state of “heavy.”

The last few weeks have been full of the heavy. Heavy issues to navigate. Heavy doctor reports. Heavy news reports. Heavy at work and heavy at home. Heavy in my family and heavy in the lives of those around us. Heavy when I wake and even heavy in my dreams.

Perhaps you can relate. There are days (weeks, years even) that just resonate with the heavy. It isn’t just the one heavy thing that fills your arms. It’s all the things, the big and the small, that press down on you, filling your mind with doubt and your soul with frustration. You try to stay focused, to choose to keep moving and believing, to do what is right and cling to what you know, but that heaviness just keep pushing.

And then you open your eyes one morning, your gaze fuzzy in the remnants of distorted dreams, and you just don’t feel like doing it again today.

That’s where I found myself this morning. And as I tried to burrow down deeper in the pit, that’s where the Lord found me, and whispered to my heart, “Do it anyway.”

Through all of the chaos that tried to cloud my mind, those three words rang louder with clarity and command- “Do it anyway.”

Don’t feel like getting out of bed?
Do it anyway.

Don’t feel like taking a shower and getting dressed?
Do it anyway.

Don’t feel like opening your Bible?
Do it anyway.

Don’t feel like talking to God?
Do it anyway.

Don’t feel like giving praise and thanksgiving?
Do it anyway.

Don’t feel like worshiping?
Do it anyway.

Don’t feel like enouraging another?
Do it anyway.

Don’t feel like smiling today?
Do it anyway.

Don’t feel like trusting?
Do it anyway.

Don’t feel like believing?
Do it anyway.

Don’t feel like hoping?
Do it anyway.

Don’t feel like forgiving?
Do it anyway.

Don’t feel like taking that step?
Do it anyway.

Don’t feel like putting the work in?
Do it anyway.

We don’t stop because of what we feel. Feelings are fickle. Don’t get me wrong- your feelings are valid and emotions are real, but they aren’t reliable! They change with every circumstance, while God changest not. He is the constant.

Yes, the tears may cloud your vision for a moment, but the vision He has given you is still there. Feel the feelings, but don’t let them pull you from your purpose. Stand back up, dust yourself off, and do it anyway.

Some days we wake up and the sun is shining and the birds are chirping and we just bask in the radiance of God’s glory. We’re excited to see what He has in store for us that day, and joy exudes from our soul. Praising comes naturally without a second thought.

And then there are the other days. The days it feels that your prayers are being ignored. The days it feels as if Satan is coming at you with all he’s got. The days you have to look really hard for goodness because your eyes are clouded with tears. The days it just seems easier to pull the covers back over your head and give up.

Those are the days of digging in deep and clinging fast- where you have to make yourself choose to believe, choose to trust, choose to keep moving, choose to see the good, choose to praise no matter what.

It’s all about the choice.

We traveled to Baltimore this past week with high hopes of getting answers for Harper. We were not getting much information from Duke, and we wanted to be sure that the medication she was on was really working. For the first time in years she was down to just one seizure medication, which was great, but we wanted to know that it was doing the job.

It wasn’t.

In the past, Harper was diagnosed with ESES in addition to everything else, which meant her brain was misfiring at night, affecting her cognitive development and learning. We’ve been treating that for years, and most kids outgrow it when they hit puberty.

As we know, Harper isn’t most kids, and while it seemed to improve some at the onset of puberty, this week’s EEG showed that her SWI is back to 90% (give or take depending on the time). That’s how frequently her brain is misfiring in her sleep. She also has frequent misfiring during waking hours.

With some trial and error, the doctors ended the study with us adding two new medications to her daily routine, both with new side effects (fatigue, dizziness/vertigo, memory impairment, changes in gait, etc). Unfortunately, the EEG did not show significant change- no change at all at night, and only mild improvements during the day.

But, this point, they don’t quite know what else to do.

So they’ve sent us home for a month on this protocol to see if it helps with a little more time, and in the meantime we wait for neuropsych to finalize the reports on their end to see where we stand in terms of her learning and cognitive function. In one month we return to Baltimore for an overnight check to see how the EEG looks.

It’s easy to feel dejected right now. My heart is aching and the emotions are raw. We came with so many questions, and we leave with so many more. Are we making the right decisions? Is there something we can do differently? Are the side effects of the meds worth it? What if there’s no improvement in a month? Are we running out of options? And the age-old question… why?

But those questions without answers on our end are questions God has already answered in His timing. These are battles He has already won, problems He has already solved, victories He already holds. So we have to choose to believe, choose to trust, choose to praise, even when it hurts.

No matter what, He is good 💜

The seasons have been rapidly changing in our house. It amazes me how that works- we get caught in some seasons that seem to last forever, and then suddenly the seasons start rushing past so fast I can barely catch my breath.

But even more amazing is the fact that the same God who stood over the last season is already at the end of this season… He is in the beginning, the middle, and the end of it all, and while my head may be spinning, not a single second catches Him by surprise. Daniel 2:21 says, “He changes times and seasons; He removes kings and sets up kings; He gives wisdom to the wise and knowledge to those who have understanding.”

So often I think it’s up to me to figure all the things out, especially when there’s a season shift. I want to plan and organize and make arrangements and assign tasks- I make schedules and lists and timelines and expect everything and everyone to follow my guidelines. I try to singlehandedly control the season, and then I get frazzled and frustrated when everything implodes and the season doesn’t go the way I anticipated.

But God is the season shifter. He holds all time in His hand and effortlessly moves everything into just the right position to fulfill His purpose and plan. These seasons are not my seasons, but His.

The changing seasons in our household have been impacting everyone. My oldest daughter started navigating some new health issues while making big decisions about her own education and career path. My middle girl entered this new high school season with hurricane force, making me wonder if we somehow skipped some seasons along the way! Job shifts have led to big changes in family dynamics and responsibilities.

And then there’s Harper.

There have been a lot of seasons shifting in her life as she is getting older and we are figuring out what works best for her. This year she has shifted to homeschooling, which proved to be one of the most difficult decisions we’ve made with her. We’ve reached a point where she needs a lot of extra support in certain areas, and there are gaps in her learning patterns. Every day is different in what she remembers and how her moods are, so we are embracing the flexibility that comes with homeschooling in order to zone in on the skills she needs and build her confidence and independence without overwhelming her. It also makes it a lot easier to let her body rest on those days she’s just exhausted and to work around all of her appointments!

One month ago Harper experienced one of those major seizures that resulted in emergency calls and a hospital stay. It was a difficult experience that we had not had to face in a very long time, and brought awareness to us all that we need to ensure she is getting the ideal treatment to gain the best seizure control possible.

So, this week we travel to Johns Hopkins for an extended EEG study in-hospital. She will have one full day of neuropsych testing, then will be admitted into the EMU where she will get an IV and EEG leads. She will be confined to the bed and monitored for around seven nights (the exact number will depend on the data they get). During this time they will start to wean her off of her medications under a doctor’s supervision to try to catch as much seizure activity as is safely possible.

The goal of this is to better characterize the types of seizures she is having and to try to pinpoint their origin. This will help to decide if she would better served with surgery, device implants, or a particular medication.

We have not shared much about this before, but Harper has also been experiencing an underlying digestive issue. Over the last year we have tried multiple medications to try to relieve her pain, but so far we have had no success. We recently got connected with a fantastic pediatric GI specialist who had us try a few more things at home, but they also did not work. She is to the point of needing more scans and tests run, and has said that depending on those results, we may be looking at another hospitalization. Thankfully, she is going to make efforts to connect with the doctors at Johns Hopkins to try to get that testing done while we are there to make it easier on Harper.

That being said, there are a lot of specific prayer requests for us in the next week. I’ll just list them here for those of you who like to pray over the details:

• Safety in traveling- we are driving, and it is a full day of travel with a lot of traffic. Baltimore is also not known for being the safest city in the country, and Kirby will be staying in a rented space, traveling back and forth to the hospital each day.
• Wisdom for doctors who will be making decisions about weaning medications and treatment options.
• A safe weaning of medicine! We have experienced some life-threatening situations in the past with this process, so this has to be done very cautiously.
• Overwhelming peace and joy… Harper’s moods have recently become more challenging to navigate and she gets very anxious- couple that with the fact that she is now adult-sized and it can be difficult to manage, to say the least! BUT GOD… He can fill her to overflowing. (And Mom and Dad, and big sisters waiting at home, as well!)
• A quick admission, a smooth EEG hookup, and easy IV access. We will be waiting around for an available room when it’s time, and sometimes that can take a while. With an EEG of this length, there are more tools involved for set up, and Harper tends to be bothered by the noises and smells (yep, that’s really a thing!). And IVs are never fun for a kid who has a rough history and scar-tissued veins!
• Seamless communication between all the different doctors on her team.
• Definitive EEG data. She has a history of being very complex, which can make it difficult to know exactly what to do.
• Good lab results and clear abdominal scans so we can avoid another hospitalization back home.
• For each of us to be aware of and embrace opportunities to share Jesus and encourage others along the way. These extended stays are challenging and it can be easy to pull in and become focused on what we’re dealing with, but as is stated in 2 Corinthians 1:4, “He comforts us in all our troubles so that we can comfort others…”

We are so thankful for your prayers this upcoming week- and for all of our social media tribe who have sent blessings to encourage Harper while we are away. We asked for some cards to cheer her up, and we’re hitting the road with a car loaded to the brim! It has been overwhelming to see the love and support and encouragement for our girl.

In every season, God is good…

Today I squeezed my girl’s feet (feet that are now larger than my own) and kept my eyes fixed on her eyes in the mirror as they eased her into the MRI machine. I gave her thumbs up signs and demonstrated calm breathing as she started to panic, and forced myself to keep smiling for her as tears ran down her cheeks.

Her thirteenth MRI today, yet she always forgets what it’s like and has that moment of panic.

For me, there’s a strange familiarity to it all now… the feel of the hospital gowns, the smell of the hand soap, the sounds of the machines, the clicks of the doors… knowing which windows give the best views as we maneuver through the corridors from one clinic to another, and which bathrooms will be the least crowded along the way.

We met with our neurosurgeon after the scans, and as we talked, I caught myself being amazed that this is the same man we’ve spoken with every year for the past ten years- the same man whose hands were used by God to save her life when she was just days old. As he sat there in his Mickey Mouse tie cutting up with her and making jokes, it was hard to believe he was the one making life or death decisions with her brain in his hands all those years ago… but I’m so thankful he was.

Her scans were once again stable. No growth in the brain cyst, no increase in ventricle size or fluid… good news, but also no decrease in any of it, either, which is what my heart longs for. But stable is good, and gives much to be thankful for.

However, stable wasn’t what I had my hope set on today, and I caught myself staring at this image of Harper’s brain on the way home, trying not to be disappointed that everything has remained the same and not gotten smaller. The doctor has never indicated that we should see a decrease, but I pray for it anyway, wanting to see that physical miracle… and today wasn’t the day.

Or so it seemed to me in that moment.

As I was staring at that massive brain cyst today, the Lord reminded me that I wasn’t staring at an unanswered prayer. I was looking at a miracle.

That large white mass taking up the back corner of Harper’s brain? The white enlarged ventricles due to extra fluid and another cyst in the center of her brain? The not-so-straight midline? All evidence of a miracle. A testimony of His goodness. Because even with all of that, my child walks. She talks. She sees and she hears. She reads and writes. She plays and imagines. She sings and dances. She loves. She lives.

That is a miracle.

We’ve been in a season of transition and figuring out with Harper. There are challenges and unknowns, and doctors tell us things like it’s time to think about what her future realistically looks like as she’s getting older, that our goals may need to be different, that there are things that just might not happen… and that’s hard. It hurts.

But sometimes in the middle of the hard and the hurt, God reminds you that He’s still working. There are miracles all around if we just take the time to see them. And there are miracles ahead if we just keep believing.

I believe that I shall look upon the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! (Psalm 27:13-14)