The name of Jesus…

Hey friends.

It’s been a while. I would like to say that’s because everything has been just wonderful and beautiful, and for a period of time, it was. But lately it has not been so lovely, and I have been in strong denial of that and have not had the words to express what we’ve been dealing with.

Somehow putting it in words makes it more real and makes it more difficult to deny. I like to focus on the positive and speak life and believe for the best.

But, here’s our reality right now…

Last night we didn’t sleep. Harper was restless as she has been almost every night for the past month. She tosses and turns and thrashes and moans and groans and cries in her sleep, calls out for us in her sleep, makes odd noises, and wakes multiple times a night. That’s all a sign of the ESES returning. Last night was worse as she was waking to vomit, not because she was sick, but as a side effect of the seizure activity. It was a long night of heaving and muscle twitching and crying.

Her days are filled with more and more confusion. It can be small things, like at dinner last night when she was confused over a dinner roll on her plate and told me she didn’t know what to do with it. “Is this for eating? Does it go in my mouth? Do I use a spoon or a fork?” It can be bigger things, like forgetting to go to the bathroom or forgetting where the bathroom is. She’s repeating things over and over again, more so than usual. She forgets what we are doing or what day or time of day it is. At school she isn’t able to stay in her seat or complete her assignments, and she has forgotten skills that she knew just a month ago. She cannot be left alone for any period of time right now, so one of us is constantly shadowing her to keep her on track. Her tiptoe walking has gotten worse, her leg and foot muscles are steadily tightening, and her right ankle is now rolling under when she walks, all of which makes her fall more and more and tires her out more quickly.

ESES is a thief. It sneaks in and steals her progress and development so fast. It picks and chooses which parts of the brain it wants to attack and leaves other parts alone, and we’re left standing in the rubble wondering how it happens so fast. It is absolutely heartbreaking, and my baby doesn’t understand a bit of it. As I sat in the bathroom floor holding her in the wee hours of the morning this morning, she looked up at me with those big, brown eyes full of confusion as tremors shook her body, and it was all I could do to keep from sobbing. Because as much as I don’t understand, she really doesn’t understand.

It is in those moments that I struggle with the words to say or the words to pray. I try so hard to be strong for my girls and to teach them to be bold and courageous, but sometimes it is hard to model that. As I rocked Harper in my arms in that bathroom floor this morning, I just whispered the only thing I could over her again and again… “Jesus.”

Friends, sometimes we just need to speak the name of Jesus over our situation. In His name is all power and authority, healing, peace, promise, strength, comfort, light, life… through Him broken things are made whole, old things are made new, the rotten is redeemed, and miracles are manifested. His name is the name above all names- and I can think of nothing better to whisper in the darkest of nights.

For those of you who pray for our family, Harps has an MRI at Duke tomorrow to measure the cysts and fluid on her brain, and we are waiting for a word back from her doctor at Johns Hopkins about what steps to take next for the increased seizures and regression. 💜

Road-trippin’ to Duke


Y’all, there are moments in which I am so unbelievably awestruck by the goodness and faithfulness of God that I don’t even know what to say.

Tonight has been one of those moments.

I came home from work this evening and jumped on the computer for a video conference with Harper’s neuropsychologist from Kennedy Kreiger in Baltimore. We saw her on this most recent trip for the annual evaluation, and I have been not-so-patiently awaiting the results!

Last year when Harper had this testing done, we came away feeling defeated. The recommendations made for her were not ones that I wanted to hear and included advising us to medicate her for ADHD and put her in public school for a special education program. We were told she would need intensive services and that she had a severe math learning disability and vision issues among many other things.

We covered the situation in prayer and felt the Lord leading us to stay the course. We kept her at Southeastern Christian Academy, worked with her amazing teachers to make the accommodations we could, got her extra therapy help, and I worked with her at home as much as I could. We had everyone continue to pray for her, and her neurologist continued to seek the best treatment options for her epilepsy and ESES.

This evening the doctor could not stop smiling as she reported TREMENDOUS growth in Harper’s cognitive development. She showed improvement in every single area. Her IQ went up 14 points. Her processing speed increased. That math learning disability concern is gone. There are no recommendations for ADHD medications, no push for a different school or program. In areas where she was totally bottomed out last year she is now on the learning curve. She is actually remembering information and instructions and engaging in conversations!

There are still concerns and deficits. She still has a lot of cognitive growing to do and areas of learning that will be more difficult. We talked a lot about social skills- as Harper gets older, appropriate social interaction becomes more troublesome. The doctor explained this as a neurological issue, stating that Harper is not simply dealing with external distraction, but has a lot of internal distraction that makes her unaware of what is happening around her socially. Our goal is to focus more on social skills this next year, and to continue working on some motor skill issues as we have been. We certainly still have lots of work to do and accommodations to make… but the doctor said that she has never seen a child with Harper’s complexities make such strides so quickly, so to keep up whatever it is we’re doing.

May I just say this- it is not what we’re doing. It’s what HE is doing! He is good. He is faithful. He always keeps His promises. His plans, His timing, His way!

He performs wonders that cannot be fathomed, miracles that cannot be counted. (Job 5:9)


I’m writing tonight from our hotel in Baltimore, which has become oddly comfortable at this point. It has become our home away from home this past year, the perfect location between the airport and the big city, and since I’m not much of a big city girl, I’ve learned that once I find a comfortable spot, I better stick with it!

It has been a strange trip this go round with the whole Covid situation. Flying was different (and this mama ended up airsick!), going out in public has been different, visiting doctors has been different… we were so blessed that Kirby could actually travel with us this time, but then he wasn’t allowed in any of the appointments with us! The doctors were all behind shields and masks, and the visits and testing were cut short to minimize exposure.

Harper had her neuropsych testing at Kennedy Kreiger yesterday, a process that usually takes 4-6 hours, but they scaled it down to just two hours. This testing looks at how her brain is functioning, how she is processing things, how she is learning, her IQ, etc. Last year she had a full evaluation and the feedback was not very positive at all. Because of Covid I did not get to meet with the doctor to get feedback, but we are supposed to have a zoom conference in the next couple weeks to go over her findings.

However, when we met with our neurologist today, she did give us some news from that testing- the initial impressions are that Harper has made tremendous gains since January! She said they saw improvements in her processing speed, her overall IQ score, her reading, her math… basically, they were wowed by what her brain is doing and the strides she has made in the last six months.

A lot of things changed for Harper in the last six months to affect this. She did the medicine to treat the ESES that worked well- which is the one we just recently had to quit. Because of health issues we had to pull her from the classroom and start homeschooling (before Covid), which means she’s had one-on-one instruction for the last six months. And she has had more therapy in the last few months, currently four different sessions a week. She has also continued to have all of her prayer warriors covering her in prayer!

We have some next steps. Harper is now down to just ONE medication twice a day- that is HUGE for us!! Just weeks ago I had a board posted in my kitchen that was full of all the different medicines and doses and times that we had to go through daily- and now it’s just one! That is amazing to me. They want an updated MRI to measure her brain cyst and the fluid on her brain, which will need to be done through her neurosurgeon at Duke in the next couple of months. Then in the next 3-4 months we have to come back to Baltimore for an overnight EEG and follow up with our neurologist. It is too soon to tell if the ESES is coming back now that she’s off the treatment, and the only way we’ll know for sure is through the EEG.

For now, we are just going to soar on this positive feedback. It has been so long since we have gotten so much positive, so we will just soak it in and thank God for it! One medicine and so far good impressions on the neuropsych testing, so let’s fly high on that this week!

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 40:31)

Thanks for your prayers, friends 💜

The elephant in the room…

There are moments in life you realize you are avoiding the elephant in the room.

You know those moments… you try to avoid a subject that will make someone sad or upset or angry. You overlook the obvious to avoid embarrassment. You don’t ask that question that you don’t really want the answer to.

Today I tried hard to avoid the elephant in the room. Harper had a busy day, spending her morning at the hospital for labs and tests and x-rays and her afternoon in therapy appointments, and by the time we got out, we had results to deal with.

Despite decreasing the seizure medication that has been treating her ESES these last six months, the lab results today showed an increase in her ammonia levels. That was NOT the news we were hoping for.

As soon as our neurologist in Baltimore saw the results, she called me to discuss what needs to be done and what that means. We immediately started a prescription to try to rid her body of the excess ammonia, and we will work to wean her completely off of that particular seizure medicine over the next week.

I was on the phone with someone this afternoon, sharing this information, and they asked me, “So what’s next? What’s the plan?” They addressed the elephant in the room that I had been avoiding, because the answer is one I didn’t want to face- nothing. There is no plan.

What does that mean? It means more bloodwork as we try to get her body where it needs to be to avoid damage to her organs. It means Harper is no longer a candidate for this treatment for her ESES, and we have another failed seizure medication. It means we have no plan as of now other than to watch and see if she goes back to having life-threatening seizures or if she continues to regress developmentally from the ESES. It means no one really knows what to do now.

It means more sleepless nights for this mama. It means putting on a brave face and weeping when I’m alone. It means my heart aches and my brain does not understand. It means choosing to believe even when I cannot see.

But it does not mean we give up. It doesn’t mean that the miracle isn’t coming. It does not mean that I do not trust my God. It does not mean that He is not working and that He is not good. It does not mean that our story is over or that we are defeated.

Friends, we need your prayers over the next few weeks. We need those ammonia levels to go down. We need the seizures to stay away when the meds stop. We need her brain to grow and develop and not regress. We need her to stay healthy and well through all of these medical appointments and the upcoming traveling. We need to trust in God’s perfect timing. We love and appreciate you all 💜

Continuing steadfastly

Oh, life with a medically complex child… it is never dull, that’s for sure.

The last few weeks have been slightly tumultuous. No one big, catastrophic thing, but just little things that make a mama tired. We increased one seizure medicine for the ESES, then decreased another one to try to combat fatigue, but then she started having breakthrough focal seizures again.

Harper had her appointment with an allergist finally, and it was determined that she is allergic to cats, dogs, grass, and mold, and he was very concerned about her two bouts of pneumonia already this year. There was no real explanation of what happened with her inability-to-breathe spells a while back, so for now we continue to carry an epi-pen and rescue inhaler. If she develops pneumonia again this year, he will want more in-depth testing.

We had been doing Telehealth physical therapy during the Covid-lockdown, but she began complaining of pain in her feet and ankles and having more and more falls, so the therapist had to start making home visits and add more exercises to our routine. She also picked up on some issues with some reflexes and crossing midline and perception/body awareness, which are some of those brain issues that are affecting her muscle coordination, so new challenges and things to try there as well.

Harps also resumed her OT services with her favorite therapist this last month, and through that she was referred over for a speech therapy evaluation which indicated a need for some auditory processing therapy as well. It has been amazing to see all the pieces coming together. Granted, it’s exhausting as that has us at four therapy appointments a week right now in addition to any doctors (and three of those are in Wilmington), but to see how they all fit together and how Harper can get help for some of these things that I thought we just had to deal with is incredible. Therapists are pretty fabulous people!

Today was one of those days that reminds me of the fragility of Harper’s condition. We tackle all of these things and do what needs to be done, but every so often we have a scare that jolts us… and this morning was one of those moments.

Lately Harper has had to have a lot of blood work done. With the medications being altered so frequently and her constant fatigue and illnesses all the time, they’re always needing to check something. So last week she had some follow up testing for thyroid function because her thyroid levels had been fluctuating, and her neurologist requested a couple of additional tests while they were drawing blood.

Well, I woke up to a message from the doctor first thing this morning that one of those levels was dangerously elevated and we were waiting on neuro to tell us what to do. Now, I know full well not to Google these things by now- but as I waited with no clue as to what any of this meant, I started searching, and went into full panic mode at the results. Liver failure, kidney failure, brain damage, lung damage, coma, death… y’all, it was not good, and I was a hot mess.

We ended up spending our day messaging doctors and making phone calls and going to the hospital for more testing- and praying, a lot! My girl was amazing through it all- so brave and strong, and even used her words to talk to the phlebotomist about the needles and blood and took it like a champ.

By the end of the day we received better news… the numbers were down from last week’s test. She is still elevated, but not at an emergency level as they thought. For now we are able to make some medicine adjustments and keep monitoring, with more testing in two weeks.

So, for those of you who pray with us through this journey, I haven’t shared a specific list in while, but I will tonight:

  • No more pneumonia this year
  • No increase in seizures as we adjust meds
  • Improvement in ESES even though we have to decrease the medicine for it
  • Improved cognitive function on her neuropsych testing in a few weeks
  • Decrease in ammonia levels in her bloodstream over the next two weeks
  • Decrease in fatigue and increase in energy

I was reading Romans 12 today, and while there is so much there to soak in, I’ll leave you with this tonight from verse 12… “rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” We do not rejoice because of our circumstances- we rejoice because of our hope, and our hope is a Person, Jesus Christ. Because of that, we can be patient in our trials (and maybe when we’re patient we should lay off the Google searches!).

But it’s that last part that God laid on my heart this evening… we always say to keep moving, to keep going forward, to continue on. But there’s a way to do that- we continue steadfastly. Steadfast means resolutely or dutifully firm and unwavering. We don’t push on with our doubts in tow- we push on without wavering from Truth. We hold on to what we know no matter what. And that verse says that we continue steadfastly in prayer. Prayer is communication with the One who sustains us- whatever we’re walking through, we are not alone.

Here’s to continuing steadfastly, my friends… praying for you and with you, and asking you to do the same 💜

Updates from quarantine

I have been struggling with the updates on here.  It isn’t that things aren’t happening- they are.  But after walking this path with Harper for over seven years now, I have reached a point where my updates seem to be saying the same thing over and over again.  This ride we are on is not so much a roller coaster of ups and downs, but a carousel of the same ups and downs going around and around over and over again.
Harper’s allergy situation has improved.  She has not experienced any more of the rashes or hives or throat closing off, and we are still awaiting an appointment with a specialist for pulmonary and allergy testing.  She has had pneumonia twice in the last few months, once in each lung now, so we are also keeping a close eye on that.  Her physical therapy has continued all this time via Telehealth visits at home, and we will be resuming occupational therapy next week.  She has a regular checkup next week as well and some lab work to be done, and then if traveling is possible we will be heading back to Baltimore at the end of July for neurological and neuropsych visits and testing.
The neurological aspect of everything has been challenging throughout this Covid-19 pandemic as Harper’s neurologist is at Johns Hopkins.  Her last EEG was in March right before everything got crazy.  That EEG showed some improvement on the Depakote treatment for the ESES she was officially diagnosed with in January, which was good news. 
Unfortunately, since March, we have already had to increase that medication twice.  Her seizures have been relentless.  Granted, they haven’t been severe, and we thank God for that.  But they just won’t completely stop.  Her sleep has been very restless again, and we’ve even seen seizure activity while she’s been awake, which is very unusual.
This is that repetitive update I mentioned before… Harper has been in this cycle with medicines since she started having seizures in 2015.  They work great at first, and then they become less and less effective as her body adapts.  That is why we have gone through so many anti-seizure medications already, and why she ends up taking the insane amount of medicine that she takes.  I snapped this picture this morning as we opened the latest bag from the pharmacy…

This is just ONE of the medicines that she takes every day, and this is a month’s supply.  That is FIVE large bottles per month going into her body of just one particular drug- she has two other daily liquid prescriptions (and by daily, I mean multiple times a day) as well as a wide range of supplements to combat the side effects and a special bag full of emergency medications we keep with us at all times just in case. 

Please do not misunderstand me- I am GRATEFUL.  Right now these medicines are keeping her alive.  I am thankful for a doctor who has found the right combination to slow down the regression in her brain function.  I am blessed that we have good health insurance to help cover the astronomical costs of these medications.  I am glad we live in a time where research is being done and new developments are being made and my baby can be treated.  And I will forever praise God for the miracles He has worked in her and the direction He has led us thus far and the joy that she brings to us.

But sometimes it is scary.  We know that we are running out of medication options.  We know how close we are to being maxed out on this treatment already, and we just started it in January.  And we know that at this point in time there are no other options aside from medicine for her condition, as was discussed with us last year.

We also are living with the reality of what all of this is doing to our girl.  She is exhausted all the time… but sleep is a joke.  She doesn’t nap at all, and she can only fall asleep at night with melatonin and then wakes multiple times a night only to be up with the sunrise in the morning.  Between feeling hungry all the time from the medicine and being wiped out all the time, she’s gaining weight.  Her memory is still struggling, but she’s becoming more aware of it, which is so hard to watch and explain.  Her behavior has been really rough the last month or two- anger, violent outbursts, high emotions, and she requires CONSTANT attention during the day.  Between the seizures and the brain issues and the loads of medications, it is next to impossible to determine what is causing what with her, so we just keep adapting and adjusting and trying new things… and fortunately the whole quarantine-situation has made it a bit easier to just stay home and deal with it ourselves for a while!

I cannot explain the “why”s or the “how”s or the “what will be”s… Honestly, I cannot even think about them, because if I let my mind sit there, I’ll drown.  And I’m not ready to drown today!  Instead, my mind has been camped out on the truths of God’s Word this week, and He has laid one passage in particular on my heart that keeps repeating through my mind… Psalm 23. 

He leads.

He restores.

For his name’s sake.

I will fear no evil for HE IS WITH ME!

He comforts, He prepares, He annoints…

He is GOOD.

Psalm 23…
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for his name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
For you are with me;
Your rod and your staff,
They comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup overflows.
Surely goodness and mercy shall follow me all the days of my life,
And I shall dwell in the house of the Lord forever.

Just hit pause…

So, this week has been pretty tough.

I know y’all can relate. We’re all finding new normals and adjusting and accommodating and looking for the gifts in the middle of the chaos. It’s not easy, and everything is constantly shifting and changing.

But in the middle of the new battles all around us, the old war is still waging over here. All of this change at one time is a lot for a girl who thrives on schedules and consistency. Learning to adapt to new routines and having more people home all the time and just having everything different takes a toll on a kid who is already on edge most of the time anyway!

But we’ve accommodated and made it work, and things were going along fairly well… until this last week. It’s been little things here and there- her ankle and foot muscles tightening up more and more for unknown reasons, causing her pain at random times… increased irritability and frustration… lots of crying… lots of tripping and falling… restless sleep and waking up multiple times a night.

This morning it all hit me like a ton of bricks when we sat down to work on math review and she had forgotten things that she had just recently mastered. She had made so much progress, and it was all gone, just like that. Her frustration grew and my heart broke into a million pieces as I watched her struggle and witnessed what ESES can do to her so quickly.

So, we hit pause. I took a moment to cry and unload my hurt to the Lord, then took a deep breath, tucked away the school work, and headed outside to play. We soaked up the sunshine and she dug in the dirt and used her imagination and all was well for a few moments.

Friends, it’s okay to just hit pause some days. Sometimes life is hard. Stuff comes at us and we don’t always know what to do with it all. There is nothing wrong with not knowing. There is no harm in crying. And there is no reason we can’t hit pause for a few moments.

We feel big feelings and think big thoughts, but we serve a bigger God. He knows what we need and what we don’t, and nothing catches Him by surprise. Hitting the pause button allows us the opportunity to step back and look away from ourselves and toward Him. It gives us the space we need to shift perspective.

And the great thing about the pause? It’s temporary! When we hit pause, we aren’t stopping. We aren’t quitting. We aren’t giving up. We feel, we release, we shift, and we find grace and strength to keep pressing forward.

“…But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.” (Philippians 3:13-14)

Take a pause if you need it today… then press on! ❤️

Comfortable with the Uncomfortable

It feels a bit odd to write about something other than the chaos that’s facing our nation and our world right now, but it’s a good diversion for me at the moment. I’m also not oblivious to the irony of writing about uncertainty and being placed in uncomfortable situations given everyone’s current circumstance!

I’ve not updated since Harper’s visit to Baltimore in January. At that time, we had just sent my husband off to OTS for nine weeks and then received the negative news from Harper’s EEG regarding her ESES, and I thought that was rock bottom.

I was wrong.

A week later, Harper got sick. Long story short, the illness led to pneumonia, plus a UTI, plus dehydration. We had over two weeks of fevers and coughing and vomiting, Tamiflu, three different antibiotics, and two different anti nausea medications- all on top of adjusting to a new seizure medicine. She and I both ended up out of school and work for about three weeks when we decided that we would need an extended leave of absence to let her build up her strength and immunity and try to catch back up academically.

I thought the extra one-on-one time would be a great opportunity for Harper to catch back up, but I was not prepared for the impact everything had had on her brain. You see, first off, Harper does not have a fully-functioning brain. She has a massive, inoperable cystic system taking up a quarter of her brain, plus excess fluid and damaged tissue that should not be there. Of course, you wouldn’t know that looking at her or talking to her, and you know why? GOD! He has done amazing things in that life of hers, things that only He could do, and for that I am forever grateful.

But that does mean that things tend to be a bit more challenging for Harper. She has to work a little harder and things don’t always come easily, so we give some extra time, some extra effort, some extra patience, some extra grace.

Well, throw into that the ESES diagnosis. ESES is known for the negative impacts on brain development, and causes regression- which means children often lose skills they once had mastered. In one article I read the doctor said it can be like waking up to a new traumatic brain injury every morning.

Now, add to that a 2-3 week long illness and missing instruction all that time, and starting a new seizure medication that has its own negative side effects (such as muscle tremors, extreme fatigue, and emotional struggles), and that’s where we found ourselves.

Fortunately we have an amazing, proactive doctor who caught things before severe damage was done, but we are dealing with the impacts. Harper is struggling with memory loss. We joke about it, but she often forgets what she’s doing in the middle of doing it or conversations that we literally JUST had. She loses things and gets lost and turned around easily. And she gets stuck on repeat, having the same conversations and asking the same questions over and over and over again.

There has also been an impact on Harper’s motor skills. She struggles with writing now. She can verbalize answers but getting them written down is a challenge. Her hands tire out quickly and she has a mild tremor now. Her gait and muscle tone have changed and she tiptoe walks quite a bit, which means she falls even more frequently than she did before- but she’s still just as strong-willed as ever and doesn’t understand, so we deal with a lot of injuries!

And finally, the fatigue… she is exhausted by mid afternoon every day, but won’t admit it, so she becomes quite a bear to deal with. We do not venture out much if we can help it because she gets so tired and can’t keep up with walking long distances but is too large for shopping carts and strollers. Because she is mobile, insurance will not cover a medical stroller, and those are quite expensive!

So, we’ve learned to adapt and get comfortable with the uncomfortable. As a result of her ever-changing condition, I had to step down from my career this past week, a decision that has been so very difficult. I love teaching, I love my school, I love my school family, and I love my students. But God has made it clear that He has placed Harper in my care for a reason, and in this season she needs my time and attention. There is also that uncomfortable feeling of our family moving back to one income and the expenses that are associated with her care, especially now that we travel to Baltimore so frequently for that care, but God has always provided and has already shown His faithfulness in this season.

So, here’s to another time of transition and watching God work. He is loving us so well through this all and showing His goodness at every turn- Harper’s latest EEG showed that the new medicine is working seizure-wise and her percentages dropped from 80-100% all the way down to 25-30%! That’s an incredible change, so we are hopeful that we will continue to see these numbers go down and start to see improvements in other areas as well.

God’s not done yet, y’all! ❤️

Ways to Bless

Today is February 12.

That happens to be one of my least favorite dates ever.  Seven years ago on this day I got news about my unborn child that flipped my world upside down, and while she has defied the odds, I still get that pit in my stomach when I remember that day.  I’m learning that there is a bit of PTSD that comes with almost losing a child, and this week in February tends to trigger some of that for me.

So today, instead of remembering all of the awfulness of those moments, I’m going to take a different approach.  In the past seven years, our family has been on the receiving end of countless blessings as we have faced trying circumstances.  We have been showered with the love of God by our brothers and sisters in Christ in very real and tangible ways, so I thought I was share some of these great blessings ideas that have encouraged us over the years.

Before I share, please note that this is in no way a passive-aggressive plea for help!  These are things that I thought were awesome, so I thought I’d share so others can have some great ideas of how to go out and bless those around them.  Here’s my list:

1. Text!  For me, being tied up with a sick child can get lonely, but I can’t always answer an actual phone call or visit with someone.  Text messages help me feel connected with the rest of the world.  Words of encouragement, someone asking how it’s going, or even friends texting about totally normal stuff keep a mom feeling a little less isolated.

2. Pray.  Like actually pray, not just saying you’ll pray.  Pray on your own, pray over the phone, pray in person, pray via text, whatever works.  There have been times when we were facing hardships that we could not even find the words to pray, but we could feel the prayers of others lifting us up.

3. Just do.  In the middle of stressful times, not everyone can think of what needs to be done.  It can be hard to think of what is needed, or difficult to ask for help.  Oftentimes people will ask if we need something, and our automatic response is, “No, we’re fine.”  If you see a need or have an idea of something that would be helpful, just do it.  So many times I’ve had friends just show up with something or text to tell me they’re taking care of something for me, and it takes such a load off- especially when it’s something that I’ve forgotten about!

4. Food.  In our house, food has always been appreciated, and it has come in all shapes and forms.  Freezer meals to save for whenever is needed, hot home cooked meals (and I learned how awesome it is when the meal comes with disposable plates/cups/silverware!), gift cards or money for ordering food, Door Dash or pizza deliveries, a fountain soda or sweet tea dropped by (I miss my Leland girls!), my favorite coffee, doughnuts for my doughnut-loving girl (thanks to Ms. Angela!)… we’ve had it all, and it has ALL been loved.  Just keep in mind that some families may have special dietary needs, so make sure you’re aware!

5. Groceries… Text someone while you’re in the grocery store and see if they need something at that moment.  Or, just grab something you know they can use… Clorox wipes, Lysol, detergent, paper towels, their favorite snack, lunchbox items, diapers if they have a baby in the house… anything you know they’ll use.  If they have sick kids at home, get sick kid items like Jello and soup and crackers… and maybe some Vitamin C for Mom!  Have them order groceries online and pick them up and deliver them for them.  Again, I’ve been the recipient of all of these things, and they have all been appreciated!

6. Siblings.  This has been a biggie for our family.  Having friends give the big sisters rides to and from school, church, ball games, etc. gives them a sense of normalcy while I’m focused on the needy one.  People have picked them up and taken them out to have fun, or sent over fun activities like movies, games, and crafts for them to do while we are housebound.  When one child in the family has special needs going on, it can be easy for the other kids to feel overlooked, so anything to include them or make them feel special is helpful.

7. Hospital Stays: I could probably do an entire post on just hospital stays and medical visits, but I’ll try to put it here!  Here’s a list- activities for kids to do while confined to a bed (Legos, coloring books, dolls, puzzles, crafts, etc.), change and small bills for vending machines and parking expenses, money for all of the miscellaneous expenses (medical traveling is expensive beyond just the medical cost itself!), special snacks, pictures to hang in hospital rooms, good hand cream, chapstick, dry shampoo, care packages for parents, care packages for siblings, offers to do laundry or clean house while they’re away, volunteering to come sit and let Mom and Dad step out for coffee or fresh air, etc.

I’m sure I’m forgetting something, but there are some ideas of how you can bless a mom who has her hands full.  We all know someone who is dealing with illness or feels overwhelmed or could just use some encouragement, so pick a person and show them the love of Christ this week ❤️

Processing and updating

On social media I said I would post an update after I prayed and processed.

Instead, I’m updating as I pray and process because this writing thing helps me in the processing. Plus, at this point, I may never be through the praying and processing!

To say that I’m shell-shocked this evening is an understatement. And I really should not be because with Harper nothing has ever, ever been as expected. Yet here I am.

Back in December I reached out to Harper’s neurologist in Baltimore after she had some visible seizures. It was a super busy time of year and there was lots of excitement, and sure enough once she was out of school and had time to rest the seizures seemed to stop. Still, we decided to follow through with our EEG and appointment this week, fully expecting to go in and hear that the meds are working as they should be so we can just continue on with our current course of treatment.


So, it’s really complicated, but basically our girl is having constant seizure activity. For whatever reason her brain is now firing abnormally most of the time. Her EEG showed right at 100% of the time in her sleep (totally confirming the ESES diagnosis) and well over half of the time when she’s awake.

The confusing part for us is that we don’t see a typical seizure so we don’t understand the severity of what’s happening. But as it was explained to me today, her brain is not getting any rest. This impacts her learning and behavior. And the high rates of “blips” when she’s awake impact her cognitive function, her attention, her learning, her focus, her memory… we never can be sure if she’s fully “with us” or not. A lot of the strange or impulsive things we notice her doing could be attributed to this seizure activity. This also puts her at a higher risk of bigger seizures and SUDEP.

Treatment is tricky. ESES is rare and fairly newly discovered so there are not a lot of options. There are three meds to choose from without going to a more challenging treatment with risky side effects. She built a resistance to one quite a while back, so that leaves us with one option to combine with our current med. This new one can have some unpleasant side effects that need to be monitored so Harper got reintroduced to blood work today- not fun.

We have a month to see if this works. There is too much at risk to let it continue, especially as quickly as it has progressed. The good news is that we caught it when we did, and that we have a doctor who is taking it seriously and treating it aggressively. She was amazed at how well Harper is doing in spite of all of this going on, but that is the power of God!

This is where I normally write all the great, positive stuff, but I’m not. It’s not that it isn’t there. It is. Spend a day with this girl and you’ll see all the goodness of God. Meet Jesus and you’ll see all the reasons to shout and give thanks. And come back to this blog later and I’ll be ready to testify again.

In the meantime, please lift this weary mama in prayer. This was not the news my heart was prepared to hear this week, and with this comes the threat of so much fear and uncertainty. I say threat because I have a choice to let it take root, and I choose daily to fight it. I have also been dealing with some minor health inconveniences of my own that are exasperated by stress, and I’m doing this without my husband right now, so this has been a season of pressing even harder into Jesus!

Bottom line, we need this medicine to work amazingly well with no side effects over this next month so we can keep pushing forward 🙏🏻