He meets us where we are…

I’m going to be real candid here- This past week tried to take me out.

We had the youngest having seizures, the middle with some mystery illness, the oldest not feeling her best, the mama with a shifting kidney stone, a hurricane that leaked water all underneath our dining room floor, and a trip to Duke… on top of regular life and bills and appointments and school and work.

By the time we made it home from Duke (after having our girl laid out in the grass on the side of the interstate as she seized and vomited everywhere) to our other sick children and my husband left on military orders for the weekend, I was ready to throw in the towel.  If you drove by my house, you just may have seen me waving the white flag out the window.  I. WAS. DONE.

So when Saturday morning rolled around- at 5:30 when my no-sleeping child decided it was time to get up- and the husband was gone and the older kids were arguing and the youngest was having tantrums of epic proportions and my to-do list was a mile long, all that was on my mind was to at least get a fast shower in before we had to leave the house.  And at the point the only way I saw that happening was to turn a movie on so that *hopefully*  no one would cause bodily harm to anyone while I washed.

As I stepped into the bathroom, you can imagine my surprise as I felt an overwhelming urge to open my Bible.  With all that was going on in the house and all that I had to do, the last thing on my mind was to sit down and read Scripture at that moment.  I didn’t have time for that!  We had somewhere to be.  I couldn’t trust the kids alone.  My mind was scattered in a million different directions.  It just was not the time.  But as I tried to argue it away, the Lord kept pressing, kept calling me to come close, kept whispering to my heart to just be still for a moment.

I conceded. I crept into my closet and grabbed one of my “other” Bibles (you know, the ones that haven’t been worn in good yet), and I shut the door behind me and said, “Okay, Lord, here I am.”

And do you know what happened? HE SHOWED UP! He led me straight to the Book of Psalms, to Psalm 65. And as I read those words He spoke life into my weary heart. So many words of that passage spoke so much truth, but the Lord had a message just for me in verse 9… You care for the land and water it; You enrich it abundantly. The streams of God are filled with water to provide the people with grain, for so You have ordained it.

Now, I’ll be honest, this is one of the verses I normally just skim right over. But God stopped me right there, and reminded me that this verse was for me.

He cares for me.

He waters me.

He enriches me.

And He enriches me abundantly. That word abundantly means “plentifully; in large quantities.” In other words, above and beyond what I ask for or even what I could imagine.

That verse goes on to say to speak of the streams (or rivers) of God being full of water- they never run dry! No matter how much it takes to quench me, there is still more. No matter how dry I am, His water keeps flowing.

And it’s flowing for a purpose. It’s flowing to provide just as the Lord has ordained. And He has ordained our provision- we will not go without.

That rest we need? We have it in Him. That answer we are waiting for? It’s coming through Him. That healing we long for? It will be manifested. That comfort, that peace, that wisdom, that discernment, that friend, that love… all of it is in Him.

He is our caretaker, our enricher, our provision, our source of living water… that is a promise to cling to. I’m grabbing on to that with all I’ve got this week- won’t you join me? ❤️

 

September already?!

Y’all, I just can’t seem to keep to a schedule with these blog posts! My goal for the last year has been to get on a more regular schedule for posting, with at least one post each week.

The last post I shared was in July. It is now September. Suffice it to say my plan is not working.

Anyway, since July things have been pretty calm when it comes to Harper. Now, in my own life with school and work and three children and a husband, not so calm, but maybe one day I’ll get around to a post about all that (or maybe not, given my track record…)

Harper started first grade and has adjusted so well thus far. She is all about becoming more independent and is so excited about learning new things. It has by far been our smoothest transition yet with her, which is an absolute answer to prayer.

As far as seizures go, I was feeling pretty confident in our level of control. We had not seen any daytime seizure activity since her hospital stay, and we spent the last couple of months weaning off of one of her medications. However, those pesky things have been trying to make a reappearance, so we are on heightened alert right now. She is back to having very restless sleep and waking up several times a night, and we have seen some seizure activity pretty consistently in the last week while she’s awake. Fortunately those episodes have not progressed to the full-blown tonic-clonic seizures, so we are still counting our blessings!

We do have a message in to the doctor to see what our next step is to stop these episodes since Harp is down to one med right now, and we have a trip to Duke on the schedule this week. While we have transitioned her seizure care to a neurologist at Johns Hopkins, we still have regular follow-ups and scans with her neurosurgeon at Duke. This week she will have an MRI to monitor the cysts and fluid in her brain, and we are praying that she will be cooperative and expecting nothing but good news!

This morning at church I heard a great message, and one of the points the pastor made really resonated with me. See, Harper is 6 1/2 years old now. We have been doing this for that many years, and we have been steadily praying all along the way. And while we have seen great miracles worked in her, we have not witnessed that total healing completely manifested yet. (And I do emphasize yet because I know it’s coming!).

We get tired. We get discouraged. We have our questions and wondering and not understanding. But this morning the pastor said something along these lines (and I’m sure he said it much more eloquently, but you’ll get the gist)- oftentimes God does not change our circumstances, but He changes US.

We are still in this battle. We still fight every day and our entire family is impacted in ways most people don’t even know. It’s been a long battle. BUT GOD has been faithfully changing each one of us along the way, revealing Himself in ways we never would have seen before, and growing us in ways that we would have never experienced. Our journey isn’t over, and He isn’t finished with us yet. We will choose to be thankful and give Him praise for all He has done, all He is doing, and all that He will still do. He is GOOD, y’all!

First Flights & Faithfulness

It was a big weekend for Harper (and Mom)… she took her first airplane ride!

She was super excited about it and had a blast, but unfortunately the destination was not so exciting. We had to return to Baltimore for follow-up testing regarding her ESES diagnosis. Since we were just there a month ago and the trip took about ten hours in the car by the time we made all the stops along the way, we opted for the one-hour flight this time. Yes, it was more expensive. Yes, it was a bit scary to maneuver the airports and big city alone with her. But all in all, totally worth it for her comfort!

Harper had an overnight EEG, a re-evaluation of certain items on her neuropsych testing, and a follow-up with the neurologist. The results from everything have been somewhat complicated.

We received the full report from her testing last month, which showed a lot of concerns developmentally. While she has made great strides and progress in so many ways, there has unfortunately been a lot of regression in other areas. I won’t lay out all of those details here, but there is a lot for us to process and consider, and decisions to pray over.

As for the ESES, the good news is that the medicine has decreased the intensity of her seizure activity in her sleep, and there were improvements in one area of her cognitive testing. However, there is a flip side to that. First, while the seizure activity is less intense, it is still at the same frequency, and the testing indicated that her memory is still regressing instead of improving as they had hoped. The next solution would be higher doses of the medicine she’s on- but we just had to decrease it because of the side effects.

We are going to instead try weaning her off of her original medicine to see if perhaps the combination of the two medicines is the cause of the severe side effects we’ve seen. This will be a two-month process, and will be re-evaluated if her daytime seizures start again, but if it goes well, we will then look at tackling the ESES more aggressively with the other medicine.

At times this journey seems so long. There is so much trial and error. There are so many questions without definitive answers. And oftentimes there are so many answers we don’t want to hear. There are times that I get angry about it, and times that I just feel sad as I wade through all of the information that comes at us. Sometimes I wonder how after over six years of this road I can still trust and believe.

Here’s how- the faithfulness of God. I see His faithfulness in every little step we take. Every milestone she makes. Every day she wakes me up with that sweet smile and too-tight hug. Every reminder she gives me and every tooth she loses and talks about infinitely. Every word she learns to read. Every song of praise that leaves her lips. Every prayer she says and every time she raises her hands in worship. Every story she tells with such animation. Every time she falls but bounces right back. Every giggle, every dance, every time I hear her little voice say, “Mommy.” Every time I watch her play with her dolls or be brave or try and try again… it is all because of Him.

And because I’ve seen His faithfulness in all the small things, I know He is faithful in the big things.

He who calls you is faithful; he will surely do it. -1 Thessalonians 5:24

Let us hold fast to the confession of our hope without wavering, for he who promised is faithful. -Hebrews 10:23

For great is his steadfast love toward us, and the faithfulness of the Lord endures forever. Praise the Lord! Psalm 117:2

A child of God…

www.youtube.com/watch

(Note: I do not own rights to this song!)

We were in the car, on our way to another appointment, and my mind was focused on the report I had just read about the Disney channel star dying from a seizure in his sleep. That report hit just a little too close to home and had me rattled, and I was in the midst of a serious conversation with the Lord in my head, totally oblivious to this song on the radio or the sweet girl who was singing along so cheerfully, when that little voice from the backseat jolted me from my thoughts…

“Hey mama! I am a child of God! And you are, too… right?”

Y’all, I almost had to pull my car right over on the side of the road. So many times I hear the Lord speak to me through my girls, but this audible, clear word from my baby’s mouth made me weep and shout, all the same time. I am a child of God, right?

You see, I’m guilty of walking around in fear. I worry about what’s going to happen or what’s not going to happen. I fret over the future. I wonder what tomorrow will hold (and the next day and the next day and the next day…). I let the words of mere men cloud my heart and mind instead of embracing the promises of God and walking in His truth.

I cower in insecurity and swim in doubt, forgetting WHOSE I am. I am a child of God! John 1:12 says, “But to all who did receive him, who believed in his name, he gave the right to become children of God.”

And what does it mean to be a child of God? Look at Romans 8:14-17…

For all who are led by the Spirit of God are sons of God. For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, “Abba! Father!The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs- heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.”

You see that? As children of God we are HEIRS of God, fellow heirs of Christ. That is some good news! And if we know that we have such an inheritance, are we really worried about the things of this world? Are we actually scared of what happens here if we know what awaits us in glory? Are We afraid that our Father doesn’t have our best interest in mind?

We shouldn’t be! And sometimes we just need to be reminded of Who we belong to. I am chosen. I am loved. I am highly favored. I am not forsaken. I am a child of God- and so is my daughter. We will not live in fear or dread, but in the joy of knowing Him and being known by Him.

And friends, guess what? If you’ve trusted Jesus as your Savior, you too are chosen, loved, highly favored, and not forsaken. You are a child of God.

Let’s walk in that truth today ❤️

Real.

The last week or so has been a struggle.

I usually try to post the good things on here- the answered prayers, the blessings, the good news- and even when the news isn’t the greatest, I try to focus on the good that is there. But today I’ll just be honest, because I think there is danger in putting up a happy front all of the time and not being real.

This week has been a lot of real. It has been bouncing around to appointments with a child who screams for thirty minutes in the car. It has been watching my usually-bouncy-and-happy little girl battle fatigue and aggression, spacing out while I’m talking to her and spending the majority of her day crying, uninterested in the things that she once enjoyed. It has been difficult conversations with doctors. It has been hard-to-swallow information and diagnoses that hurt my heart. It has been pages of reports that bring me to my knees and fear that threatens to cripple me. It has been reverting back to checklists and schedules and techniques to ease my girl’s days as her mind and body grapple with medications that wreck her. It has been saying no to many of the things we usually enjoy this time of year and praying that my other girls will understand. It has been painful, it has been challenging, and it has been lonely.

I found myself weeping one night, which is something I don’t often do. I am just not a crier, but the floodgates opened and as I sat there in a puddle of tears, I was shocked as I realized that I was mentally berating myself for being emotional. I was downright angry at myself for crying. “Get it together! You’re stronger than this! You can’t solve any of this by crying over it!”

And as I chastised myself, I felt the Lord whisper to my heart, “You’re wrong.”

The fact of the matter is, I cannot get this together. This situation is far beyond me, and that is hard for me to accept. I am a fixer. I want to make everything better, especially for my babies. But this time I can’t. Now, don’t get me wrong- I won’t stop trying. I will fight for my girl, even if that means traveling all over the U.S. to get her help or telling a doctor that some of their recommendations just aren’t happening because while they may know her condition, they don’t know her.

But sometimes my fighting isn’t enough, and I have to realize that. Sometimes my fighting needs to be less of my own efforts and more of my prayers to the One who can get this all together. Sometimes I need to do less standing up and running around and more kneeling down and surrendering. (And by sometimes, I mean all the time!)

I also came to the realization that I am not stronger than this. I am weary, I am worn, and I am weak. I’m not strong enough to face this! But the One who is in me is, and His strength is perfected in my weakness. And He does not expect me to face this in my own strength.

As for all that crying? Well, the tears may not solve anything, but the Bible says that God sees them all and that He cares. He draws near to and heals the broken-hearted. Psalm 56:8 in the Message translation says it this way… “You’ve kept track of my every toss and turn through the sleepless nights, each tear entered into your ledger, every ache written into your book.” The tears matter, and my brokenness drives me even closer to Jesus.

So, to those of you who need to hear this reminder, here you go: it’s okay to feel broken. It’s okay to not have all of the answers or be able to fix it all. It’s okay to feel sad, to feel weak, and to feel scared or angry or disappointed. It’s okay! Feel all the feelings. Let it all out.

BUT- don’t stop there. Push through those emotions, cry out to God, and let Him heal your hurt as only He can do. Let it all out to the One who can take it all and bring beauty from ashes. Let Him hold you and mold you and lift your tired bones back up from the mess. We may not get up off the floor with all the answers, but we can step forward with the One who already knows the outcome. I don’t know about you, but I would much rather grab His hand and walk on than hide away and wallow in my tears.

Be real, but be real to the real God. And if you need a friend to lift you to the real God, I’m here ❤️

The low-down on Baltimore

We are tired.

Two weeks ago today we left home, and we are on the road as I write, making our way back south. (And for that I am SO grateful!!)

It’s hard to summarize this whole trip. A lot has happened, and it will take some time for us to get full reports on everything. Harper has her neuropsych testing at Kennedy Krieger at the start of the trip, and there were some definite red flags, but I have a phone conference next week to get the official word on that.

Harper spent eight days total in the EMU at Johns Hopkins, hooked up to the EEG and monitored round-the-clock by video. We had the usual hospital experience with IVs and nurses and doctors, mom sleeping in a recliner, hospital trays of food, and so forth. Through it all our girl kept smiling and cooperating and making friends with everyone who walked in the room. The only time we had tears was at the end, the last two nights at bedtime when she realized she had to sleep there yet again, and the last day as they removed all the sticky stuff that had broken her skin.

The goal of this trip was answers. As Harper has grown, she has made her way through a list of medications that haven’t worked for controlling her seizures, and there haven’t been any other options. The doctor’s main purpose with this study was to see if they could pinpoint where Harper’s seizures are originating with the hopes of being able to offer surgery as an option down the road. Naturally, the assumption has always been that her seizures are coming from the part of her brain where her brain cysts are.

That assumption was correct- and incorrect. Unfortunately, this EEG proved that her seizures are coming from two different locations, both the left and right sides of her brain. This most likely means that surgery will not be an option to help her, but her case will be presented and discussed at their conference next week and they will let us know their recommendations from there.

The other thing that came up this week is a new diagnosis. While Harper does have seizures at various times of the day and still has a tendency to go into status, she has also developed a rare from of epilepsy called ESES, which means she is having seizure activity pretty steadily in her sleep. This is escalating into seizures in one part of her brain that we do not see her having- the EEG showed three definitive seizures in addition to the other activity in one night, and she never even woke up.

Our immediate concern as parents is the danger factor, but the doctor did offer some reassurance that while the risk of death is higher with seizures in sleep, that is associated with tonic-clonic seizures, and Harper shows a pattern of waking up and making some noise if the seizure starts to spread like that. The biggest concern at this point is learning and development. ESES can cause a regression of skills, learning disabilities, memory loss, etc, which combined with Harper’s cysts and damaged brain areas is not ideal.

They have decided to start an aggressive treatment immediately, which is a high-dose of a medicine she happens to already be on. It is a strong medicine, but since she has been taking it already they know she tolerates it well. It will just take some time for her to adjust to the higher doses, and we will go back in a month to have a smaller round of testing done to see if this treatment is proving to be effective for her.

Fortunately we are out of school for the summer so we can get this testing out of the way and give her body time to adjust. She is extremely tired, a little unstable on her feet, and quite moody, but we’re hopeful that will all settle down in the next couple of weeks.

We have so much to be thankful for, and as always we can see God’s hand in it all. It is a blessing to know Harper is getting the care she deserves- as a parent you will do whatever it takes to get answers and help for your child, and it has been a relief to finally see that happen. Now we keep pushing forward, for He who promised is faithful!

The next adventure

Kindergarten graduation.

There have been times that I’ve questioned that tradition, that I’ve wondered what the fuss was all about. I mean, I didn’t have such a thing when I was a kindergartener. What’s the big deal?

But last week our youngest, our miracle, donned a cap and gown and received her “diploma,” and all I could do was weep. She sang, she danced, she recited, and she READ, and I was in complete awe of everything she accomplished. The miracle of the moment was not at all lost on me as I soaked in the goodness of God.

And now it’s summer break, and while we see other families enjoying fun vacations, we are preparing for our big trip to the hospital Baltimore, which is less than two weeks away. I am, quite honestly, not excited about all of this.

We will be traveling up a couple of days early to enjoy some family time in D.C. before we have to face all of the medical stuff. Harper’s first day will be spent at the Kennedy Krieger Institute for neuropsychological testing. She went through that about a year and a half ago, and for her it’s fun and games for several hours as they see how she is doing with her learning and development. It’s very helpful for us to make sure she’s getting the services she needs and pinpoint strengths and weaknesses.

The next day we will be meeting with Harper’s new neurologist at Johns Hopkins. We have already been so impressed with her, and we have decided that it is worth the traveling to be sure she is getting the best care possible. Unfortunately we have seen an increase in seizure activity over the last several weeks, so we know it’s time to explore more options.

After those appointments comes the biggest challenge- Harper will be admitted into the EMU (epilepsy monitoring unit) at Johns Hopkins for seven days. I will be staying with her, and she will be hooked up to all of the monitors from head to toe and we will camp out there for a week.

That’s our biggest need for prayer. We will be very far from home. Daddy and the girls will have to come back to N.C. and leave us there. She will have to deal with all of the monitors and wires and an IV. She will be confined to a tiny room in a hospital bed with very limited mobility. Seven days is a long time for a little girl in that situation!

They will also be weaning back her seizure medications during that time to increase the likelihood of seizures. They need to see what kind of seizures she’s having, where they are coming from, etc., so they need to see seizure activity. We have done this one time before at Duke and it was completely nerve-wracking… and ended with Harper in the PICU. Her seizures are so unpredictable and very difficult to stop once they start, so it can be a scary situation even in a supervised hospital setting.

So why do it? Well, without gathering that information, they can’t find the best treatment options. She’s only six years old, she’s on good-sized doses of two medicines, and we have quite a few failed medications behind us already. Our options are becoming more limited, and we are still seeing that issue of her medicines losing their effectiveness every couple of months. And the hard truth is that it only takes one seizure to lose our girl.

So we have covered this in prayer and we press on trusting God’s hand in all of this, and we covet your prayers as we embark on this adventure. Of course we appreciate any prayers as we prepare, but please plan to lift Harper up June 10-19. We will post updates as we can! ❤️

15 years of being a mom.

That’s what this girl’s birthday means. I was so young and so naive when she came along. I missed out on so many moments and took so much for granted… it felt like all I did was blink, and now she’s a gorgeous teenager with dreams and ambitions and a very busy life.

She’s been our first at everything, which means we’ve made a LOT of mistakes, somehow she has become this amazing, godly person in spite of us, and I couldn’t be more proud of her.

Trustworthy? She’s it. Responsible? That’s her. Committed, hardworking, strong, independent? Yes, yes, yes, and yes.

She inspires me in her confidence to be exactly who God created her to be. She knows who she is and Whose she is and she walks firmly in that. She knows what she wants out of life and she goes for it with all she’s got. She lives her life to the fullest and shrinks back from no one, and I love watching her blossom into who she is intended to be.

This journey of mommyhood seems so long in the everyday mundane, but then suddenly you’re looking at a young woman chasing her dreams, sending her off on her own to pursue those dreams, putting her behind the wheel of a car, looking at pictures of her with her own people having a blast at prom- and all you remember is that tiny blue-eyed baby who needed you for everything. It is true what they say- “The days are long but the years are short.”

Happy 15th birthday to my beautiful “Rae” of sunshine… you shine wherever you go, and that smile of yours has always been able to light up the room. Thank you for giving me the greatest title I’ve ever had, the title of “Mom.” You are a gift ❤️

Documenting…

I have hesitated on writing this post this week.  I just don’t know that I have the right words, but this blog has been a place for me to document the journey we’ve been on with Harper, so here goes…

This weekend was a big one for our family.  A year before Harper was born, my husband joined the military (as a reservist, not full-time!), and God really began a big work in both of our hearts, and it didn’t take long for my husband to realize God was calling him into ministry as a chaplain.  It took a little longer than that for him to accomplish that- years of schooling, ministry ordination, applications and paperwork and interviews, and loads of prayer, but he finally did it, and we were blessed to see him commissioned this past weekend.

We had a great day planned on the base after that with family day activities that are held once a year- music and food and games and an air show.  The family was all there and we got ourselves set up in the middle of the masses.  The girls were playing on the bouncy houses and Harper was singing and dancing for everyone… and out of nowhere, the seizure came.  She lost her balance and tumbled down the inflatable slide, but seemed okay at first, but then came the crying and confusion that we have been seeing right before a seizure starts.  I was able to hold her on my lap for the first few moments, but then we had to find a way to lay her down safely- a difficult task as we were in a big asphalt parking lot surrounded by people.

We got her down on a towel and one of us held her head as someone else timed the seizure, and as we got close to four minutes we had to administer her rescue meds.  We had the help of the medics on base and they called an ambulance- it was all a blur of commotion.  Her seizing slowed down after the rescue meds, but she was not conscious and her oxygen saturations were lower than normal, so they transported her to the ER via ambulance.  She was stable by the time we arrived at the hospital, so they just monitored her for a bit and let us take her on back to the hotel.

Harper did not sleep well that night, and had one more seizure that I know of.  We packed up and headed home, and she began to get sick.  She developed a cough and a fever, which have now been with her for three full days.  We have seen the doctor and had the usual tests, but no clear indication of what is making her sick at this point.  Our last stop today was at the hospital for a chest x-ray, and she became terrified when they pulled out the gown for her to wear.  She now associates gowns with bad things (she says that’s what they make her wear when they make her go to sleep), and cries whenever she sees one.  So we settled on topless x-rays today! (**Update… we now know she has the start of pneumonia in two places in her lungs)

The culmination of events hit me tonight at dinner as Harper prayed.  Every night Harper says the blessing- it is her thing.  And her blessing is always the same- “Dear God, thank you for this day.  Thank you for this food.  Amen.”  She is a creature of habit.  But tonight her prayer suddenly changed.  “Jesus, please help me feel better.  And please help me not to have to go to the doctors anymore.  If I have to go, please help me be brave.  Amen.”

I think my heart may have broken into a thousand pieces.  This girl is the bravest girl I know.  She is a warrior, and she faces every day with courage and joy and faith.  And I can see how God has been working through her precious life since day one, and I know that His plans are for us and that He is good.

But tonight I want her to catch a break.  I want her to not have to be brave.  I want her to not have to see doctors all. the. time.  I want her to not be terrified at the sight of a hospital gown.  I want her to not be knocked down so hard by every little sickness that comes around.  I want to go to sleep at night and not worry that I may not hear her if she seizes.  I want to go through a week (or even a day) without the thought of losing my child crossing my mind.  I want to rejoice on our good days and not be waiting for the chair to be kicked back out from under me.

Today as we drove to the doctor, Harper asked for a song, so I played one of our favorites.  It’s a long song, and there is a lot of repetition, but sometimes I just need to remind myself of who God is.  Harper sat in the backseat with her eyes closed and sang this song, and I found great comfort in the words… “Way maker, miracle worker, promise keeper, light in the darkness, my God, that is who You are…. Even when I don’t see it, You’re working.  Even when I can’t feel it, You’re working.  You never stop, you never stop working…”  Regardless of what I see and how I feel at the moment, He is making a way, He is working miracles, and He is keeping His promises.  That is where I rest my heart tonight.

Wait for the Lord

Well, friends, we haven’t posted in a while again, and that’s always a good sign! Harper started a new medication in January and it was our most successful transition yet. In fact, we made it right at three months without a single hint of a seizure!

Unfortunately our streak ended this week. She has had five episodes in seven days, each one progressing in intensity, and all coming completely out of nowhere with no warning. Today was the fifth, at her cousin’s birthday party while Mom and Dad were exploring in the woods with the older kids. We got our cross country workout in as we raced back to the house- and this mama realized how out of shape she is 🙈. This episode started like the others this week, but did actually go into a full blown seizure. Fortunately it ended on its own and did not require rescue meds.

We are back to complete frustration with our current neurologist as we have not been able to get a response this week (after she used the wrong name and sent medicines to the wrong pharmacy), but our appointment at Johns Hopkins isn’t until June when Harper is out of school. That means we have to try to deal for a little over two more months.

The good news is that we are in contact with our new neurologist and she is on top of things. She is quick to respond to our questions and has already been working on Harper’s case. She just recently posted an updated report based on Harper’s last MRI, which explained things a little more in-depth for us. She identified one large porencephalic cyst, several smaller cysts, a lot of white brain matter on the left side, dilated ventricles, and stated that she believes this is indicative of a severe case of cystic encephalomalacia (which I know nothing about!).

Between this report, doctor frustrations, and the sudden increase in seizures, I am feeling a bit dejected this weekend, but this is all part of the roller coaster ride we have been on for the last six years. I think it’s no coincidence that I opened my Bible app this evening to see this verse from Psalm 27:14: “Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” Sometimes it can be so hard to wait! I am not the world’s most patient person, and I am not really a fan of waiting.

But waiting doesn’t mean He isn’t working. It means He is doing more than I can see from my limited point of view, that He is fulfilling a purpose far beyond my scope, and that what’s waiting on the other side is far greater than this mountain we’re climbing.

So tonight I am proclaiming the words that David wrote just before that fourteenth verse… “I believe that I shall look upon the goodness of the Lord in the land of the living!” No matter what, He is good, and we are living in His goodness, and there is more of that goodness to come.