Well, we had our shortest trip to the emergency department to date with Harper this evening… Definitely counting that as a blessing!  She was down for a pre-dinner siesta, and we found her at about 5:45 in the bed having a major seizure.  She had been in bed for about an hour, so unfortunately we have no idea how long she was actually seizing.  By the time we got to her, her muscles were rigid down the side of her body and starting to convulse, her heart rate was elevated, her jaws were clenched, and she was starting to vomit- all indicators that she had been seizing for a while.

We were able to administer her emergency medication at home before the paramedics arrived, so the seizure was slowing down by the time we loaded the ambulance and she was passed out in her heavy Valium-induced sleep by the time we got checked into the hospital.  Based on the frequency of our visits lately and the fact that she was stable, we were able to skip IVs and blood tests and all of that and just get monitored for a few hours.  Then they let us take her back home to be under our watch overnight, and encouraged us to speak with her neurologist about her medication.

So that’s where we are now… Watching her like a hawk and sending messages to Duke.  Our appointment up there isn’t until the end of May, and this has been our third ER visit in a month, so I’m starting to feel a bit anxious.  There are so many questions running through my mind- Is this medicine not a good fit?  Is this just a new pattern or way of life for Harper?  Are there even more seizures that we just aren’t noticing?  Are these long seizures going to cause long term damage?  Are we missing triggers?  How safe are all of these medications and scans for her little body?  

So many questions without answers.  So many wonderings about the future if I dare let my mind wander there.  But if I’ve learned anything at all through this journey, it’s this- one moment at a time.  Sometimes that’s a day at a time, and sometimes it’s just a minute at a time.  I cannot dwell on what may or may not happen, or how this roadmap isn’t leading us in the direction I wanted.  In order to preserve any ounce of sanity I may have, I must focus on the very next step… And making sure I take that step as I hold the hand of my Father.

While Jesus was in Bethany in the home of a man known as Simon the Leper, a woman came to him with an alabaster jar of very expensive perfume, which she poured on his head as he was reclining at the table.
When the disciples saw this, they were indignant.  “Why this waste?” they asked.  “This perfume could have been sold at a high price and the money given to the poor.”
Aware of this, Jesus said to them, “Why are you bothering this woman?  She has done a beautiful thing to me…”
-Matthew 26:6-10

We’ve all been given talents, gifts, something of worth to be used for a purpose.  And if we look around at the world in which we live, we can easily become convinced that we need to use what we’ve been given to better ourselves, to push ahead of someone else, to make a life that’s a little more glamorous or at least more comfortable than what we have.

But what happens when we take our gifts and give them all to Jesus?  Well, we certainly may face some opposition, just as the lady with the alabaster jar or perfume did.  People around us- coworkers, neighbors, friends, family, even brothers and sisters in Christ- may question us and ask why we are “wasting” our talents.  Why spend all your time serving those people who don’t seem to care?  Why give your money to the church when you could buy more things for your family?  Why work that job when you could be doing something more prestigious?  The world is full of “why’s” when we go against the flow and choose to follow God.

But look at how Jesus responds to those offerings.  “She has done a beautiful thing to me.”  What makes no sense to the world is beautiful in His sight.  He desires all of you, all of me… Not more money, more fame, or more stuff.  Just the offerings of our hearts. He wants us to give to Him out of love and devotion, to simply offer ourselves in worship and in service, recognizing that without Him, we have and are nothing.

A few years ago, our family went through a really dark period… it was one of those seasons in which everything that could go wrong, went wrong.  Our church family was a constant source of encouragement to us, and one of the ways they ministered to us was to collect some money to help meet an immediate need that we had at the time.  A huge blessing in and of itself.  But, with the money came a little bag of coins, given from the child of one of our friends.  She heard her parents sharing about the needs we had and wanted to give what she had to help- $0.80.

I still have that $0.80.  What that little girl doesn’t know is that her sacrificial gift of the coins she had saved has served a purpose beyond that immediate need at the time.  I keep that bag of coins as a reminder of how God provides and sustains, how He never fails, how He is always looking out for His people.  It’s a reminder that we are the body of Christ, and we are called to love one another and serve one another, and to sacrifice for each other.  That bag of coins is a beautiful thing to me as it has served to encourage my heart and uplift my spirit over the past few years.

Our gifts don’t look the same, and aren’t meant to be compared.  A sacrifice isn’t measured in relation to someone else.  What I have to offer looks mighty different from what my friends have to offer or those people over there have to offer or even what my own family members have to offer- God created us each individually, and we’ve been blessed uniquely.  And when we each give our all to Him, He accepts our gifts and calls them beautiful.  For my gift to be called beautiful by the Giver of life, the Creator of all things, the Savior of the world?  I can think of no greater reward.  Be encouraged, friends, to go do beautiful things for Him…

  
We sat on the dirty kitchen floor with tear-stained cheeks and ate jelly beans together in silence, my three-year-old and me.  Neither of us had really won the battle that had just been fought.  We had gone into war as enemies (at least in her mind), but jelly beans joined us as allies once again.

Our fighting and our tears were for different reasons, of course.  She’s strong-willed.  She’s a fighter.  God created her that way intentionally- she needs that fight to survive.  Tonight it was over her medicine.  Oh, how she hates this new medicine!  There’s no reasoning with a toddler over why taking medicine is important.  And she’s smart enough at this point to detect it in anything we try to disguise it with.  So, tonight I wrestled her in the floor to take it, endured the hitting and scratching and screaming, and prayed that once I got it in her it would stay down.

And then I cried with her.  Because sometimes it’s just. not. fair.  Sometimes I just can’t understand the why’s.  Sometimes I just want the ride to stop for a bit.  Sometimes I just want to feel normal again.  There have been a lot of these small moments lately that build up into big feelings… Watching my daughter seize and lose control of her body.  Watching doctors and nurses surround her while I stand helplessly to the side.  Getting to know paramedics and ER nurses by name after calling 9-1-1 so many times.  Sleeping with one eye open to watch for seizure activity at night. Being haunted by visions of blood stained sheets from failed IV attempts.  Knowing that every minute of every seizure puts my baby at a higher risk of not-good things.  And having to fight and force her twice a day to take something that she hates because I know she needs it to keep her safe and with us.

And that’s it.  She’s with us.  These moments can be hard and frustrating and even sad, but they’re just moments.  And moments pass, and I still get to enjoy life with this girl and my other two incredible girls.  It can be easy to wonder why we have to walk this path, why there’s so much pain and struggle in the journey- but it should be just as easy to wonder why God has chosen to bless us as much as He has.  So often I’m that toddler in the floor, crying and fighting against what God is telling me is for my own good, pushing against His best plans for my life because it isn’t what I want… But He still loves me.  He doesn’t give up on me.  He’s still good, and His ways are still perfect.  I don’t have to understand it or know what comes next or really even like the process- I just have to choose to trust the One in charge.

As I find rest in that truth tonight, I pray that those of you who are in the midst of your own battles can pause for a moment and focus on His goodness, finding comfort in His perfect sovereignty.  He loves you.  His plans are ultimately for your good.  He will not desert you. Rest in that this evening- and maybe eat a jellybean or two while you’re at it.

Yes, you read that correctly- we are back home!  Harper did great overnight in the hospital in spite of spiking a fever in the evening, so we were able to be discharged before lunch today.  The fever stumped us a bit- it could mean she just had a virus, which led to the seizure, or it could have been post-symptomal.  It’s kind of the whole “which came first, the chicken or the egg” thing.  But in any instance, the fever is gone and she’s home.

We’ve done a lot of sleeping and resting this afternoon- she is still exhausted and woozy from post-seizure effects plus the loads of medications.  We know it may take several days for her to fully recover from all of that, plus she will be adjusting once again to an increase in daily meds, so we will be taking things slow and easy.

These moments of calm after the storm are when this mama starts processing the emotional baggage of it all… The what-if’s, the why’s, the maybe’s, the what-now’s… This condition my daughter lives with is so very unpredictable.  We get comfortable just to be shaken up again.  She is so joyful, so vibrant, so full of life- and yet within hours I can be helplessly standing to the side watching her fight for her life.  It is heart-achingly difficult.

Yet I know this is a gift- a refining of my faith.  God doesn’t call us to live in safe waters.  He doesn’t command us to stay where we are comfortable.  His desire is to grow us, and this life of uncertainty stretches me into unchartered territory… At least for me.  But it isn’t unchartered for my God- when I can’t see what ahead, I have no choice but to lean on the arms that hold me up.  

For those of you who have been praying for our family, thank you so much.  In the throes of chaos and stress and worry, it’s such a blessing to know we have family in Christ going to the Father on our behalf.  Thank you to those who have sent messages and texts, who have called, and who have offered help in various ways… And a huge thank you to my parents (and grandparents and sister) for the help at the hospital yesterday.  We are incredibly fortunate to have such an amazing support system!  God is good…

  Well, friends, our life is never dull.  This morning around 6:30 Harper sat straight up in the bed after a restless night’s sleep, and when I asked her if she was okay, she just shook her head no.  I noticed that she kept darting her eyes to the side, so I got her into the living room and we started observing and timing.  

After 15 minutes of off and on seizing, we called the paramedics and had to administer her emergency meds.  They arrived, the seizing stopped, and after promising to take her to our doctor, we avoided an ambulance ride to the ER.  However, 45 minutes later as the meds wore off, the seizing started again, so we had to call them back and went straight to the hospital.

We were so anxious after our last experience in the ER, but today was amazing.  The nurses were incredible, the doctor was proactive and on top of things, and they wasted no time in getting the seizures stopped, consulting with Duke, and running all of the tests and scans.  After a chest X-ray, ct scan, and bloodwork, everything was stable and we were admitted to the pediatric unit for monitoring and observation overnight.

And that is where we are.  The doctors have decided to double Harper’s daily medications so that we will go to twice a day instead of just once, so prayers for that because it is only offered as a tablet or “sprinkle” and she does NOT like taking it.  So far since being admitted today we haven’t been able to get a dose in her.  However, she did wake up for a little while and eat a snack, so we are hoping that she will continue to make good progress through the night so that they can send us home by lunch tomorrow. 

As we always say but always sincerely mean, thank you so much to our incredible prayer warriors out there.  Harper is blessed to have you all interceding on her behalf.  ❤️

This world is becoming a more maddening place by the day.  I have heard more witnesses to tragedy over this past month- suicide, murder, drugs, broken homes, abuse, adultery, job loss, disease- so much pain.  And these aren’t stories I’m hearing on the news or about strangers on the street.  It’s all around me.  It’s happening to my people and to their people- it’s close to home.

And when I take a break from the sadness all around and retreat to the world of television and social media, it’s even worse.  Political wars, people beating each other down over trivial things, racial divides… Countries all over the world at war with one another, threats being made, bombs erupting, lives being taken every minute.  To say it’s all a bit discouraging is an understatement.  It can feel overwhelming and dark and hopeless.

BUT, there is hope.  You see, the same God who heard the groaning of His people in bondage in Egypt all those years ago in Old Testament times is still listening to His people.  As the Israelites struggled in slavery back then, God came down to rescue them.  He didn’t abandon them or leave them to their own devices.  And even as Moses, the one He called to be used specifically by God for a big purpose, hesitated and asked questions and tried to figure things out on his own, God patiently reminded him that He would be with him (Exodus 3:12).  And, more importantly, in Exodus 3:14, He reminded Moses of who He is.  I AM WHO I AM.

Read that again.  I AM WHO I AM.

Let that sink in.  You see, friends, those five short words mean everything.  He is who He is.  He has never changed, and never will change.  We can count on Him to the ends of the earth without fail.  Whatever it is you’re facing, whatever that mountain is that you’re trying to climb, whatever trial looms ahead, the great I AM has promised to be with you.  He is infinitely holy.  He is infinitely wise.  He is infinitely strong.  He is infinitely powerful.  He is infinitely mighty.  He is infinitely limitless.  He is infinitely victorious.  He is without beginning and without end.  Nothing that has happened or is happening or will happen catches Him by surprise.  He knows- and in all of these things He is continuously looking out for His people.

I don’t know about you, but there is something amazingly comforting in knowing that the great I AM is on my side.  When peace seems to evade me, I can always find solace in my God.  He alone is holy.  He alone is able.  He alone is worthy. Let’s rest in that today and give Him the praise for the victory He’s already won.

The LORD is my strength and my song; he has become my salvation.  He is my God, and I will praise him, my father’s God, and I will exalt himl  The LORD is a warrior; the LORD is his name.  -Exodus 15:2-3

Then I heard what sounded like a great multitude, like the roar of rushing waters an dlike loud peals of thunder, shouting: “Hallelujah!  For our Lord God Almighty reigns.  Let us rejoice and be glad and give him glory!”  -Revelation 19:6-7