Hey friends and prayer warriors!  It’s been over a month since I’ve posted anything, and my last post was pretty glum, so I’ll start this post off with some great news:

15 days seizure-free!! 

Yes, we are officially over two weeks with no seizures, so that it is reason to celebrate!  Over the past month, some crazy things happened with Harper.  At the end of September, Harper had a 24-hour spell of breakthrough seizures.  We had a couple of good days after that, but then she suddenly stopped swallowing her medicines.  We had a rough week of trying to switch meds to liquid forms and coerce her to take them, days of only getting half of her doses in her, bouncing back and forth to doctors, and dealing with small seizures.

Then, just as fast as it started, it ended.  She started taking everything again.  Her Duke neurologist referred us to the ENT up there to check out her tonsils, which are fine.  They have also requested a swallow-study in November.  We contemplated calling that off once she started taking the meds again, but over the last several days she has started struggling and gagging a lot again, so for now we are going to hold on to that appointment.

In the middle of all of that going on, we got a call from the Kennedy Krieger Institute in Baltimore through Johns Hopkins to set up a round of testing.  They are ready to do the neuropsychological testing, so we have an appointment for that in December.  It isn’t invasive, just one long day of tests, but the goal is to evaluate strengths and weaknesses and determine if there are any specific brain “functions” being affected by her cysts and seizures.  It’s more of an informational test to help the doctors know how much she is being impacted by what’s happening in her brain, and also to help us in planning ahead for school and therapies and such.

So, by way of prayer requests, lots of traveling in our future.  One more Duke trip and a Baltimore trip before Christmas, so pray for travel mercies and a happy traveler!  We also have to make a decision this week about Baltimore travel- Kirby could take time off of work and we could drive again, but the last trip was not so easy with Harper.  It’s not an impossible trip, but it is long and she did not handle it well at all.  Our other option is to spend the extra money on flying just Harper and me up there, which wouldn’t take long at all.  But I’ve only flown a few times myself and Harper has never flown, so the thought of flying alone with her and then catching rides around the big city on my own is a bit nerve-wracking!

This ride with Harper is nothing short of a roller coaster.  It’s so unpredictable, flying from one extreme to the other with no warning.  Right now things are going really well.  No seizures in the last couple of weeks.  Preschool is going well.  She’s growing and learning and playing.  With everything so calm and smooth, it’s hard to move forward with testing and doctors.  It would be so nice to just take a break from it all and try to be “normal” for a bit.

But, as has been the case since that day in February 2013 when they told us there was a problem with our unborn baby, we feel like we are just waiting for the next drop.  It’s the whole roller coaster mentality… how far up will we climb before we fall again?  It’s been the pattern for several years now.  To be clear, I still have faith in God’s divine intervention.  I totally believe that He could completely heal her if He chose.  But I also choose to accept His good and perfect plan- and so far that hasn’t been complete healing of our girl.  Does it make sense to me?  No.  Does it always seem fair?  Not even close.  But I serve a God who knows exactly what He is doing, who is never caught off guard or surprised by this crazy world.

Kirby and I are currently working with the children at our church, and over the last few weeks there is one word that has come up in our lessons through some of the New Testament books: endure.  It’s been a theme through our studies as we’ve talked about enduring through trials and staying the course when you’re weary and it’s hard.  Enduring when you don’t understand or it doesn’t make sense.  Enduring through persecution and pain and heartache.  Enduring because of the power of Christ, pushing through in His strength and not our own.  Enduring because this world and it’s troubles are temporary, praise God!

Everyone is fighting a battle of some kind.  Some battles are big, some are small, but they all wear us down.  Health issues, financial issues, marriage issues.  Dealing with loss, addictions, job struggles.  Just trying to make it through Monday can be a battle some weeks!  But we can endure- not because of our might, but His.

Have you not known?  Have you not heard?  The Lord is everlasting God, the Creator of the ends of the earth.  He does not faint or grow weary; his understanding is unsearchable.  He gives power to the faint, and to him who has no might he increases strength.  Even youths shall faint and be weary, and young men shall fall exhausted; but they who 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 40:28-31)

I have a confession to make.

And, before you read any further, here’s a fair warning.  This isn’t an all-is-well, find the silver lining kind of post.  This is more of a raw, venting kind of post.  And I don’t write it for sympathy and I don’t write it to be told that my faith needs to be stronger or that I need to trust more or that I need to count my blessings.  I know these things.  I write this to be real, and to process through my emotions that are running rampant these days.

So, all of that being said, here’s my big confession: I am not strong.  I hear it all the time.  People hear our story or follow our journey and will comment on my strength and on our faith, but the truth is, I am a weak human being with sinful tendencies and doubts and fears that happens to serve a mighty, faithful God who loves me in spite of myself.  For that, I am thankful.  I can’t imagine the sludge I would be in without His grace.

I’ve been in somewhat of a silent struggle for some time now with this journey we’re on.  Harper is tough and strong and healthy.  At first glance she appears to be totally normal four-year-old.  But behind the scenes we are pumping her full of medications, watching her sleep at night, worrying too much over every bump or fall.  She goes to church and school and makes it through her hours in public settings, but at home we deal with the repercussions of those outings.  We are constantly learning what she can and cannot handle, and learning her cues for when she’s had enough.  We rub and squeeze and brush, we do exercises and hold her and face the critical stares in public when people think we are babying her too much.  We face hard-to-make decisions, from outings to schooling to how much testing do we allow… do we consider surgery, do we prepare for the worst, or do we wait and see?  We juggle doctors and therapists and testing and document seizures and fill out paperwork and it seems never-ending.

And, every so often, I reach the end of my rope.  And I laugh at the thought of anyone thinking I am strong, when in fact I am a weeping puddle of emotions on the floor.  The fear of the what-ifs, the guilt of the wondering what I missed or did wrong in my pregnancy, the worrying over if I’m doing enough now… and then the guilt over the fear and wondering and worrying, because my trust should be fully in God.  It can be a vicious cycle, and a painful one at that.

Today I found myself sobbing in the Walmart parking lot, trying to pull it together to go in and buy groceries without looking like a total crazy person (which, by the way, I’m not sure I pulled off!).  We had some communications with Johns Hopkins today, trying to make decisions about going up there for further testing- the neuropsych testing isn’t too invasive, so it’s not a tough decision, but the EEG study terrifies me.  When we had that done at Duke, Harper ended up in ICU.  They knew what to expect, they had IV lines in place and a plan, and it still resulted in a critical situation.  My mama heart is reluctant to go through that again.

The doctor at Johns Hopkins also received all of Harper’s MRI images and reviewed them and wrote a report of the findings that was much more detailed that anything we have received from Duke.  It broke me.  The multiple diagnoses, the big words that hold an awful prognosis, the number of cysts in her brain… it’s so much.  I look at my miracle child who is learning and growing and playing and coloring, who loves me so hard and whom I love so much, and I cannot fathom all of these things that are happening in her brain.  It makes no sense.

And perhaps where nothing makes sense is where we see God most.  I feel angry that my baby has so much to overcome.  I feel sad over the what-ifs.  I feel terrified of the fact that any one of these crazy things she has could take her from us at any given time. All of these heavy emotions and feelings are far from strong, and that’s okay- God never said we wouldn’t experience pain and heartache.  He created us, emotions and all, and in our weakness He is strong.

And He created my daughter… the one that was never expected to make it this far.  She has already far exceeded worldly expectations.  And, as my husband pointed out, the truth is that not one of us is guaranteed tomorrow.  And God has already used her mightily in so many ways… isn’t that what we want of our lives and the lives of our children?  To be used by God?  That is our ultimate goal in this insane life.

So, at the end of this very long, wearisome day, my strength is zapped, my mind is tired, my heart is aching, and my faith feels like it’s been battling a war.  I share all of this to show that, hey, we’re all human.  We all have our low points and our bad days and our rainy seasons.  And that’s okay.  God doesn’t demand our perfection to come to Him.

And, knowing that we’re all imperfect and we all have our struggles, let’s be easier on the other humans we see along the way.  Share a smile, offer a hug, forgive more freely, give grace – you never know what battles someone else is fighting.

We know many of you have been praying for us this week as we made the trip to Johns Hopkins, and we are very thankful. We wanted to take a quick minute to give you an update.

We had a consultation with the director of the pediatric epilepsy center this morning, and she gave us a lot of information to think on and pray about. First, she did reassure us that we are on the right track with medications. We are at the max on one, but we do still have room to go up on the other. Once the other is maxed, there isn’t much else to do with medications.

Since Harper has a history of going into status with her seizures and has recently developed a tendency to stop breathing when she has them, she recommended that we no longer wait on administering the emergency meds. As soon as we see her seizing, we give it.

Our biggest concern was what comes next in Harper’s treatment. After the last EEG study at Duke, we had been given bad news, that surgery wouldn’t be an option and meds would become ineffective and there wouldn’t be much to do. However, Dr. Kelley reassured us that this is not necessarily the case. We do still face the medicine risk, but surgery is not completely ruled out. Rather, we need further testing. They want to evaluate her MRI images to look at the cyst in more depth, and they would do another extended EEG study (about a week long). She said the cyst may be blocking some of the data, and they could also do a study in which they actually place probes on her brain rather than her scalp.

Those are things for us to pray about. For now, her meds are working fairly well, and there is room to increase one. Obviously we don’t want to do surgery unless necessary. However, she has a pattern of going through this honeymoon phase with the meds and then out of nowhere going into major, life-threatening seizures. Operating on her brain could stop the seizures, but could also impact development and certain skills depending on what area of the brain they pinpoint. On the other hand, the younger she is, the quicker the recovery and the more likely she is to regain those skills.

Heavy decisions, and a lot to process. In the meantime, we head back home. We continue to go to Duke for her immediate care, but make sure everything is relayed to Johns Hopkins. We are supposed to get her vision tested because the cyst is in a location that can be interfering with certain fields of vision. And Dr. Kelley highly recommended having neuro-psychological testing done… we can do that in NC, but would possibly have to have it redone up there if we go through with any other testing, so we have to decide how to proceed with that.

So, that’s that. We walk away with hope for future options, but the weight of big decisions. We feel very comfortable with this doctor and her level of confidence and expertise. It’s a long, expensive trip for treatment, but we feel it’s worth it. God has big plans for this girl and her story is far from over!

By the end of last week, we were on cloud nine. The week began with the threat of surgery and infection concerns and Mama was a nervous wreck, but then God reminded us who's really in charge, and we walked right back out of Duke with good news and no operations, and life was good.

And then came Monday. My sister and her family were faced with some devastating news, so we were doing our best to help them, and I had a house full of kiddos running around and playing and having a big time. Harper was right in the middle of it all, full of energy and decked out in her Princess Ana dress, when out of nowhere she started stumbling and walking into furniture and walls as if she couldn't see anything. She worked her way to the corner by herself, and went into a full seizure.

We were able to get her stripped down and laid out in a safe place, and the seizure lasted just over five minutes. At one point she stopped breathing, and we watched as her lips began to turn a bluish-purple color… it felt like everything was in slow motion. I had her rescue meds in hand, and the phone ready to dial 9-1-1, but she suddenly took a gasp of air and started to come out of it on her own.

In the week prior to this we had seen a couple of very small seizures, but this is the first major one she has had since starting her new medication at the high doses. And this is the first time in well over a year that she has had a seizure in the middle of the day while playing and being "normal." It is very rare for her to experience seizures while she's awake, so this one caught us completely off-guard.

That was enough to ruin Monday, but then we got one more blow before the day's end. Her CT scan report from last week was finalized and released to us. The good news is that they still consider everything to be stable. However, the report did state that she has a large porencephalic cyst in addition to the complex cystic system that was there and dealt with at birth, and while it is considered stable and has not yet impacted her ventricles or midline, it has started to slightly increase in size since September.

This is not alarming news to the neuro-team. They've told us from the very beginning that they can't predict what will happen, and these are the things they've been watching for all along and will continue to monitor. But it hit these parents hard this week. These are scary things. These are difficult things. We have cried and prayed and we know that her life is in God's hands and that His plans are ultimately for good, but it still hurts when we get smacked with painful realities.

I took Harper in for blood work yesterday, a task that gets harder every time as she knows now what it means and how it hurts. We are waiting for those results to see if these seizures could possibly be something as simple as a medication level being off before we take any kind of action. We hit a roadblock with getting her into Johns Hopkins for a second opinion, so we are praying over how to handle that. A lot of waiting this week.

One of my favorite quotes over the last few years is from John Piper: Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have. This has been a week of deep weeping. But we will wash it off and keep moving, and embrace the life we have, the gifts we've been given. And we will continue to trust God, firmly believing that no matter what, He is faithful and He is good.

"My God is so big, so strong, and so mighty, there's nothing my God cannot do." We've been singing that song in Kids Worship the last few weeks, and I'm ready to shout it today! After worrying myself sick the last few days over Harper's impending surgery, God showed His might once again today.

We traveled up to Durham last night and stayed in a hotel near the hospital so that Harper could sleep a little later this morning, although we did have to wake her in the wee hours of the morning to take her meds so many hours before her procedure. She handled the morning like a champ, not once complaining about missing breakfast, and we made it the hospital right on time.

The first stop was in radiology for a CT scan of her head, which proved to be the biggest challenge of the day. Harper was a bit overwhelmed by the technicians with their scrubs and the big machine, and she melted shortly after we entered the room. It took a little longer than anticipated, but with the help of a very patient technician and a stuffed bunny rabbit they were able to get the pictures they needed.

From there we went straight to the neurosurgeon, who gave us the good news that her bones looked just fine and there was no sign of infection in them. No one is really sure where this suture came from- she does have stitching on a bone flap in her skull, but this is a different type of stitch in a different location, so who knows? He then informed us that in his 25+ years of operating he had never seen anything like this- it's not every day a four year old suture just suddenly pops through the scalp. But, Harper has never done things in a typical fashion!

He decided to take a chance at something to avoid the operating room. They covered the area with numbing cream for 45 minutes, then said they would take just one shot at snipping the stitch and pulling it out… so I curled up with Harp on the table, snuggled her up close, and it worked!

They were able to get the majority of the stitch out, but there is still a small piece in there. It could be cut out, but he said that for now it isn't worth the risk of surgery. So, we are hoping that it will work it's way out of the skin on its own, like a splinter, and we will keep an eye on the area for signs of infection. He said he cannot guarantee that she won't have to have it cut out down the road, but he's hopeful that it won't come to that.

I could write a book of all the answered prayers we have had with this kid… it is truly amazing how many times she has defied the odds or avoided surgeries or procedures or done exactly what no one expected. God has proven Himself time and time again, and I really should know by now not to worry! But in spite of my doubting, He still answers our prayers, still works His wonders, still remains in control… through it all, He is faithful, He is mighty, and He is good.

I awoke this morning with my mind caught up in a dream I had last night. It was an odd dream and I couldn't wrap my brain around it. I was falling through the rain, deep gray skies all around, but right before hitting the ground I was caught up in someone's arms and set upright on my feet, and all around rainbows began to shimmer through the dark skies. And in an instant I went from paralyzing fear to overwhelming joy at the sight of God's promise in the sky.

Now, let me just say, I do not normally have these deeply profound dreams. I have weird dreams that make no sense at all, crazy dreams with talking animals and random people, the kind of dreams you just forget about when you wake up because they're so ridiculous. But last night's dream could not have come at a more perfect time, and I learned that at about 9:00 this morning.

You really would think that with all of the unexpected we have faced in the last several years, nothing would catch us off-guard anymore. But, alas, here I sit in my confusion and shock. We have another surprise visit to Duke ahead of us this week.

We noticed last week that Harper has what appears to be a heavy-duty stitch popping through the skin on her head. Unfortunately, it has only popped up on the middle, and both ends seem to be securely fastened to something and aren't coming out. It's getting red and sore, and after sending pictures to her neurosurgeon, they want to see her Wednesday. We will be doing labs and CT scans because there is some concern that she could be developing an infection in her bone in that area, and they are planning to put her under and take her to the operating room to fix it. The good news is that if her scans are clean and her skull looks good and everything goes smoothly, we should be able to take her home that evening without having to stay in the hospital overnight.

This was not in our plans this week. Life has been hectic, crazy and busy but normal, and that's been a good place to be, a comfortable place. And while this is not really a major thing, it feels like a major thing. It's been a day of phone calls and texts, coordinating with doctors and friends and family to make sure everything is taken care of. It's been stressful and worrisome and I'm getting cranky. And I've cried, a lot, because quite frankly, I just don't want to do this. I don't want to visit that hospital again and smell all the smells and hear all the sounds and feel all the emotions. I don't want to send my kids off in every direction to be cared for by others. I don't want to put my baby through needles and tests and scans. And I certainly don't want to place her in the hands of a doctor who will put her to sleep and then cut on her precious head while I helplessly sit in a waiting room with other distraught parents, trying not to worry.

Nope, I don't want to. But, I have to. And I have to choose to trust in the promises of the One who has formed this sweet girl, whose plans are always better than my own. I have to choose to fall into His arms, and to look through the rain and see the rainbow. He isn't finished with us yet.

Please pray with us that this will be a simple procedure, that there will be no issues with her bone and no infection to contend with, and that Harper (and Mom and Dad) will have peace through this little bump in the road. Thanks friends

Oh, Duke days.  They are draining, even on the better visits.  We were there today, making a visit to the neurologist after they called this week and requested to see Harper now instead of waiting another month.  We have been playing email and phone tag since our last stay here, and that does not always work so well when there are issues and concerns. 

Harper has been having seizures more frequently since our extended stay here, but fortunately not daily.  So far we’ve made it about two weeks between spells, and then she’ll have multiple seizures over the span of a few days.  We are going to be making another medicine change, this time switching one of her meds to a time-released tablet at a pretty high dose. This will be our last change to this medicine- if this doesn’t work, we have one more new medication to try before we will have to explore different options. 

We addressed some other concerns while we were here as well.  Harper has been having daily stomach pain, so we will be trying a daily prescription antacid to see if that helps.  The doctor said that it can be common for children on anti-epileptic medications to develop reflux issues.  They are also testing her liver function to make sure she isn’t having some effects in that area due to all of her medications.  

We are being referred to an opthamologist to check Harper’s peripheral vision and to examine her optic nerve- because of the cyst on her brain she could have some issues with pressure on that nerve, so they want to rule that out.  

There are so many little things that come into play with Harper’s issues. Between the brain cyst and the epilepsy and the medicines, we have lots to contend with.  Sleep problems continue, so we’re going to try melatonin.  Behavior issues can be any combination of factors, as can her confusion and forgetfulness.  However, we were told today that we need to be prepared for issues like ADD/ADHD, focus and concentration, and learning struggles as she starts school, and that we will need to make sure she’s in a school setting where she can have an IEP and receive the help and services she will need.  It was also confirmed once more that Harper continues to have a significant weakness on the right side of her body, but that due to the cyst and brain issues she has, that will most likely be something she will deal with permanently.  And, as summer is here, we were reminded of keeping Harper hydrated and cool since one of her meds makes it hard for her to regulate her body temperature.

All in all, it was a productive trip, but once again I walk away feeling… bleh.  None of this is major in the scheme of things, and it isn’t really “new” news.  We’ve always known there will be hurdles to jump as Harper continues to grow and develop… and when we pause to remember that we were expected to not make it to this point, we have so much to be grateful for.

But it does grow wearisome.  It seems something pops up at every bend in the road.  There is always another appointment, another test, another specialist, another medicine, another thing to keep in mind.  It’s a hard road as a parent, and it’s a hard road for her.  Sometimes I just want to put a pause on it all, or to see an end in sight… but we can’t stop, and there’s always one more step to take.  So, in those moments of utter weariness, I find hope in these words of truth:

But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. (Isaiah 40:31)

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. (Galatians 6:9)

As we journey on, please pray that we will have a smooth transition with medicine, that we will get positive news from the bloodwork and the visit to the opthamologist, and that we will have wisdom and discernment as we explore schooling options over the next year before kindergarten.  Thank you all ❤

Thirteen years ago I lost control of my life.  The plans I had shifted to the back burner and the way I viewed the world and my purpose in it took a new form.  I became overprotective and overemotional, overwhelmed and over myself as I realized that every decision I made from that point on would affect this little person in my arms, this little girl that God had given to me.

She was a feisty little thing from the get-go.  She was itty-bitty, under six pounds by the time we brought her home, with a big, bald head and big, bright eyes.  She was fiercely independent and curious from the start, always pushing up and looking around to see what was happening, never interested in naps or cuddles.  She didn’t like to be confined, always wanted freedom to explore the world around her.

I don’t remember a time in which she didn’t talk- it seems she has been asking questions since she left my womb.  We used to laugh as she would ask, “But why?” with every answer we gave her… it was cute when she was two, but has become less cute in the last several years!  But it just is who she is- always seeking answers and explanations, needing to know the who, what, when, where, why, and how of everything.  She likes plans, likes to know what’s coming next, likes to know what to expect.  She desires justice, sees things in black and white, and believes in doing things on purpose with good reason.

And to this mom who has nothing figured out, who messes up daily, who is flying by the seat of her pants more often than not… this daughter of mine is a challenge!  We push each other out of our comfort zones and push each other’s buttons.  There are battles of will and control, battles over right and wrong, and, some days, just battles because we can battle.  We are polar opposites in so many ways, yet we share the commonality of strong will and bullheadedness.

But at the end of the day, she is mine.  My oldest daughter, my firstborn, my sunshine, the one God gave to me to raise and instruct and learn from.  So to my Raegan, here is what I have to say to you on your 13th birthday…

You are a cherished gift from above.  You have been uniquely created and formed in the image of God by the Master Creator, and as much as I love you, He loves you all the more.  Your strong mind and insistence are gifts from Him that can be used to lead others on paths of righteousness.  Your quick wit and quirkiness bring smiles and laughter to our days, and my heart swells with joy when I see your desire to help and serve others.  You have always embraced who God made you to be, so continue to live unashamed.

I am a messy, flawed mama, but my prayer is that my imperfections drive you to seek out a holy and perfect God, for He alone can fill all of our empty places and make us complete.  You are a strong and intelligent young woman, and I pray that you see those traits as gifts from God to be used for His glory.  Be strong in the Lord and in His mighty power, and be wise in the ways of His Word.  He has equipped you with all you need to be a world changer… after all, you’ve already changed my world.

I love you to the moon, my sunshine….

This blog is most often used for Harper updates, but this week we’re shaking things up a bit as we’ve had other big things… happy things… going on in our family.  We spent this past weekend celebrating the head of our household as he graduated with his Masters of Divinity from Liberty University- and that was a big deal.

You see, when I met my husband many, many moons ago, I never would have imagined us being where we are today.  We were both kids with our own plans and agendas, and we were both believers, but God had a lot of work to do in each of us.  Over the years there was an ebb and flow of surrendering to God’s work in our lives and fighting against God’s work in our lives.  We both had battles going on that no one knew about, and that made for some rocky roads as we started a life together.

In 2011, as we were coasting along, doing life, and thinking we were doing a good thing by including God in our plans, Kirby came to me and told me he felt called to join the military as a reservist.  We both had careers, we had a home and a family, two daughters to raise… it seemed like an insane proposition.  But I could sense his urgency in following through with where he felt the Lord was leading, so we became a part-time military family.

I had no idea the journey we were embarking upon.  I knew we would face challenges, but I didn’t know that God was in the process of turning our lives completely upside down. We spent the first part of 2012 separated as Kirby went off for training.  And it was in that separation that God began to do big things in each of us… hard things, painful things, things I did not enjoy.  God revealed sins that had long since been hidden, because revelation is necessary for redemption.  It was a time of pruning and stripping away and finding ourselves at rock bottom so that God could bring forth a new thing.

And that He did.  As I struggled with His plan that was so contrary to my plan, He continued to bring beauty from ashes, showing me that He was working things together for good.  We added our third daughter to our family, further proof that He alone is the one in control.  With her, I once again lost sight of all of my plans as we had to face life and death and feel pain that we had never experienced before.  We were forced on our knees in prayer, forced to surrender as things slipped further and further beyond our own control, forced to be a team of three- husband, wife, and God.  Being stretched and pushed doesn’t always feel good, but when it comes from the Lord, it’s for our good.

It is truly amazing what God can do with a heart surrendered fully to Him. We spent years living in this limbo of giving God parts of ourselves, but not all of ourselves.  We allowed Him into areas of our lives, but not our entire lives.  And we made our plans and tried to work Him into those plans without seeking His plan.  But He didn’t give up on us, refusing to let us settle for our own agenda.

This weekend, I sat in a gymnasium with other families as the military graduates of Liberty University were recognized.  The floor was full of men and women in uniform, brave people who are willing to sacrifice everything for others.  A chaplain spoke to the crowd, and he shared one phrase that stuck with me over everything else… “God doesn’t want to be included in our plans.  He wants us to be included in His plan.”

How true that is.  God isn’t concerned with my agenda.  I spent so many years thinking I had it all figured out, of working toward my own goals and mapping things out in my own finite wisdom.  And time and time again, my plans faltered and failed.  My vision for the future didn’t look anything like the life I am living now.  But He had greater plans in store.  

The process has been painful at times, and there are days that it still hurts and doesn’t make sense to me… but all of those moments point us to an awesome God who has all things in His control for His plan and purpose.  All of the struggle and the ache brings glory, not to me, but to the One who carries me.  So often we quote Jeremiah 29:11… “For I know the plans I have for you,” declares the Lord, “plans for welfare and not for evil, to give you a future and a hope.” But do we really take note of the meaning?  He doesn’t say that He knows the plans we have for ourselves, or that He’s going to work our plans out for our good.  He is the one with the plan, and He alone is our future and our hope.

At the close of the final ceremony we attended this weekend, we watched as all of the graduates of the School of Divinity gathered at the altar with their professors.  It was a sea of caps and gowns, tassels and cords- symbols of great human achievement- kneeling before a Mighty God as they laid hands on one another and prayed over this next chapter of their lives, surrendering themselves to His calling to be salt and light, to spread the Gospel, and to further the Lord’s kingdom.  All of those men and women, my husband included, gathered together to commit to God’s plan… a beautiful, powerful moment.

I am so humbled that the God of the universe saved me from my plan and delivered my family into His plan.  I am grateful that He never gives up on us, and that He can redeem and restore the most hopeless of situations.  I am thankful that His perfect plan of salvation reaches down to even the most vile of sinners, and that His miraculous, life-changing, transforming, turn-your-world-upside-down power exceeds and overcomes our humanness.  We serve a mighty God.

We sat side by side in the hospital room on a Saturday night date night, watching our daughter sleep.  He vocalized the question that has plagued my heart and mind for the longest time, the question that floats around and around with no answer: “Why?”

So many why’s when it comes to this journey we’re on, yet so few explanations.  We had had a completely normal day, a perfect evening, and then the beauty of normal was ripped apart by horror as we found our daughter not just seizing, but also not breathing.  There was total chaos as we grabbed meds and made phone calls and our house filled with paramedics.  Strangers surrounded our daughter in our bed, a stretcher waited in our living room, rescue vehicles blocked our street.  

And just as quickly as the chaos ensued, all was calm.  Her little body settled down with the help of her meds and she began to breathe and then snore.  The doctor offered to admit her overnight for observation, but we declined and took her back home to rest.

The sun popped up in the morning and so did Harper, full of life and energy and conversation as if nothing had happened.  And for that we are so, so thankful.  God has been so faithful.  But yet with every episode like this we endure, the fear grows greater.  There is no explanation for why she has these seizures that are so intense.  There’s no good reason for her daily meds to not be working.  The doctors don’t know what else to do at this point.  

This is something Mommy and Daddy cannot fix, and it hurts.  We have researched and cried and prayed and asked, “Why?”  And we know the right answers- that God is in control; that His plans are “to prosper and not to harm”; that “all things work together for good”; that ultimately it doesn’t matter why but Who.  

But we are still human and it isn’t easy and some days we are just frustrated and discouraged and want answers.  Praise God we have a Father who allows us to feel these things and hears us when we cry, who comforts and encourages us in the midst of the struggle, who strengthens us and holds us up, and who loves us even when we don’t understand.  Our hope is Him alone.