Once again…

Once again, I’ve not posted in a while. A really long while.

There are a lot of reasons for that. Work. School. Life. And Harper has done really well through all of the busyness of everything, so I’ve been holding on to that and feeling “normal” again.

It’s funny to me the “normal” things that we once took for granted are now big steps. We’ve made it a couple of months with just her regular therapies and no doctor’s visits. She had a good report card without an extensive amount of extra work or tutoring. She’s participated in school parties, festivals, and musicals. I was able to stop using a checklist to help her remember how to get ready in the morning or at bedtime. She even started sleeping in her own bed in our room instead of beside me in my bed! I began to rest easier at night, to not analyze her every move, to loosen the reigns a bit and let her be a kid. It was good.

Things were going so well that I reached out to her doctor in Baltimore to ask about postponing her next appointment in January. She agreed.

And the very next day the seizures came back.

I’m not going to lie- I’m kind of mad about it. Actually, I’m really mad about it. Just like that I’m back to watching her every move. I listen for the rhythm of her breathing to change in her sleep. We’re falling back on checklists to keep her on track and helping her get dressed and reminding her of where things are or what she was just doing. Easy things are becoming more difficult again and her memory seems to be failing her again.

I see her frustration. I see her confusion. I feel her fear and anxiety as she loses control of her body. Last night I held her on the bathroom floor when she should have been snuggled in her bed and I watched her face contort in pain and her muscles twitch involuntarily and I wanted to scream for her. It is not fair!

I hate this disease. I hate what it does to my baby’s body and her brain. I hate the toll that it takes on our family. Yes, hate is a strong word, and it isn’t one that I toss around lightly, but tonight I feel it.

I know that we are the blessed ones. It could be worse, so much worse. We’ve experienced worse, and we see those who live with worse every day. I don’t take that for granted.

But tonight I’m mad. I don’t doubt the goodness of God and I don’t doubt that He is working a plan greater than me and my feelings. I know that my girl brings glory to Him and that ultimately she is His. I have hope that this is not it, that we will see complete healing. But in this moment I feel angry.

And I share that not for pity. I’m not looking for a pat on the back, nor do I need anyone to tell me that I’m wrong. I put this out there to encourage someone else who doesn’t understand the why, who feels angry or frustrated or disappointed, who keeps waiting for that prayer to be answered, who is weary and worn, who feels alone or unnoticed.

You’re not alone. And feeling those feelings does not make you any less. I understand. Our paths may be different, but I get the emotions and the thoughts and the feelings.

Better yet, He knows. The Maker of the heavens and the earth knows your every thought before you even think it. He has formed you and given you purpose, and He loves you with a love like no other. He is good. He is mighty. He is faithful and just. He hears you, He sees you, and He is with you.

In that truth is where I find my rest tonight. I’m praying you do the same, friends ❤️

“He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is He.” (Deuteronomy 32:4)

“O Lord, you have searched me and you known me! You know when I sit down and when I rise up you discern my thoughts from afar... You hem me in behind and before, and lay your hand upon me.” (Psalm 139:1, 5)

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


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 ❤️

Little kids, Big questions

I feel quite certain that God gave me my three darlings to continuously school me on life, on grace, and on myself.  Today was yet another lesson for me… You see, I so often get caught up in this journey we’re on with Harper and lose sight of a lot of other things- like how it isn’t just me on this journey with her, but also my other daughters.  I forget sometimes that they’re constantly observing and learning and living this crazy life just as much as I am.  And today, my middle girl reminded me of that.

It’s been a crazy couple of days.  Harper had physical therapy yesterday, and all was well until she suddenly walked away from her therapist, sat down on a bench, and started seizing.  It was completely unexpected and caught us all off guard, but she regained control on her own and picked right up where she left off.  However, she was all out of sorts all afternoon and evening, and it wasn’t the easiest day at our house.

Today was her occupational therapy evaluation, which again went well but it was deemed that she should commence weekly services there as well.  She worked hard, but was over it by the end of the session, and was a total bear from that point on as we tried to run a few errands before going home.  In the car, the outbursts began- lots of yelling and screaming and kicking, and Maddie’s patience was wearing thin with her little sister.  There’s only so much torture a seven year old can take without snapping, and as we got closer to home, she had had enough.

“Mommy!  She’s always so mean!  Make her stop being mean all the time!”

I hesitated in my response.  Yes, at that moment, Harper was being mean.  And I am a firm believer in disciplining children for meanness.  I am that mom that is always saying (in a voice used especially for those with selective hearing), “Quit being ugly!”  However, it was near nap time, she had been stretched emotionally in therapy, she’d been drug around on errands in the miserable summer heat, and a combination of seizure activity and anti-seizure medications make for nasty mood swings.  So I attempted to explain to the frustrated big sister that Harper had been through a lot that day and that her brain works differently than ours at times, but that just like all of my girls, God made her special.

And with that, I felt pretty good about my answer- for all of about two seconds.  Because then Maddie’s brow furrowed and she blurted out, “Well, why couldn’t God make her special and nice?!”

I had no answer.  Because although it sounded pretty funny, it pained me a bit.  It’s a big question, a question that’s rolled around in my own mind from time to time.  I know God could completely heal my daughter, but for reasons I may never fully understand, He hasn’t.  He saved her life, no doubt, and for that I am eternally grateful, and He’s brought her farther than we could have dreamed three years ago.  But she still has all of these things, these stumbling blocks, these hurdles to jump over.  And while I can see God at work, I can’t fully explain the why’s.

Which always brings me back to the reminder that while I don’t know why, I do know Who.  And I know He’s with us, I know He is good, and I know His plans are ultimately for good.  I know this in my heart, I embrace it in my soul, and I repeat it in my mind on those hard days… But I don’t know how to explain that to a seven year old girl who knows God loves her and her sister, but doesn’t understand why her sister has to hurt and fight so hard and struggle so much (and why she has to be so cranky and hard to deal with so often!).

So, for today, I told her the truth… that I can’t explain how God works, that I don’t know all the answers, and that I, too, sometimes wonder why… But that God doesn’t call us to know everything.  Instead He asks us to trust Him with everything.  And for today, that was answer enough for her.

And tonight, my prayer is that it can be answer enough for me, as well.  Because ultimately this life isn’t about me, or any of my daughters, but about Him, His plans, and bringing glory to His name.

Trust the mommy gut

Moms, when you have that feeling that something just isn’t quite as it should be when it comes to your children, trust it.  I am learning more and more that I am more in-tune with my kiddos than I think, and it’s always better to err on the side of caution.

We’ve had a rough past couple of weeks with Harper.  I had started to notice small things with her- she struggled with climbing up and down stairs, was uneasy on playground equipment, and started having more falls and kept bumping into things.  Then the behavior issues started.  She’s been super aggressive again, and prone to screaming spells- not the typical three-year old tantrums (although there are plenty of those!), but she also has spells of just pacing in circles and screaming for long periods of time.  She has been a little more apt to shutting down in large crowds or loud places, and then last week the small seizures started again, the first of any kind of seizure activity in about two months.

I have a tendency with Harper to do one of two things- be overly paranoid and question every little difference I see, or ignore things and deny that she has any special needs.  I go from one extreme to the other, and here lately I’ve done more of the ignoring and denying.  She is so smart and funny, such a ball of fire and full of joy and energy, and it is easier for me to chalk up the discrepancies I see as “quirkiness” and just go about our “normal” life as much as possible.

But this time deep down I couldn’t shake the feeling that I needed to ask some questions, and while I was hesitant to reach out, I did finally speak with some people and the decision was made to start with a physical therapy evaluation.  We went today, and a part of me was clinging to the hope that I was being overly cautious.  I really felt that the evaluation would reveal that Harper has no issues other than an over-protective mother.

Unfortunately my gut instinct was right.  It is time to restart weekly therapy services.  We sat down this afternoon and have developed some goals to start with for physical therapy, with the understanding that occupational therapy may be in our future again as well.  And I’m not going to lie- once we got in the car to go back home, I had a moment.  While I am thankful that Harper is able to get what she needs before she falls even farther behind, and I’m grateful that she’s overcome as much as she has in her three years of life, it’s never easy to be told that your baby needs help.  It’s hard to be told that there is a problem, no matter how many times you hear it (and by now you think we’d be used to it!).

No, this isn’t the end of the road, and in the grand scheme of things it’s really a minor setback.  It’s nothing that we haven’t been told to expect as Harper grows, and things could be far, far worse.  Her seizures are still under control at this point, but if they continue we will have to consult with the neurologist again to be sure we aren’t missing something.  She hasn’t lost any skills yet, which is remarkable for the intensity of the seizures she’s had. She just isn’t moving forward on her own as smoothly as we had hoped.

We are learning that Harper’s condition is going to keep us in a constant state of learning.  We never can get too comfortable, and we certainly cannot predict what will happen in the next few hours for her, much less years down the road.  But she’s a fighter, feisty and determined, and I know this is just one more hurdle for her to make her way over one way or another.  God has big plans for this kid, and we’re just along for the ride, trusting Him every mile of the journey.

An eventful week

I almost have to laugh at how many times I start to feel “normal” and things get calm and easy and comfortable- and then Harper shakes it all up again.  We had another one of those weeks this week.  We made it just over a month with no seizure activity of any kind, no fevers or illnesses of any kind, and consistently getting her to take all of her medications every day.  It was a dream, and it was lovely, and I got a little too comfortable with the normalcy.  We were able to go out and do things, be a part of the real world again, and we even started her back in her Sunday school class with other children, let her sleep in her own bed again (but still in our room of course!), and did a little traveling (although not too far away!).

This week the germs hit.  She developed a cold, which quickly progressed into croup and a couple of scary nights of breathing issues.  Sleeping and eating have been issues all week again, and we are back to not being able to get all of her meds in her system on a regular basis.  And when you put sickness, sleep disturbances, not eating/drinking as much, and not taking medications all together, seizure activity is expected.  In fact, we start seeing all the little signs that we are starting to recognize that tell us “a big one is brewing” (in the words of her neurologist).  Fortunately it hasn’t happened yet, so we are thankful for that!

We have seen both the pediatrician here in town and the neurologist at Duke this week.  She had a steroid treatment for the inflammation in her windpipe, and a chest x-ray due to the wheezing in her lungs- we haven’t gotten the results from that yet, but assuming no news is good news!  I was warned about this time of year and the outdoors with her- we’re already cautious with the temperatures since one of her medications prevents her from sweating so she overheats super easy, but apparently she also has some issues with bug bites.  They tend to swell and get infected easily and she had a couple of spots they were checking out, so we have to be extra vigilant with protecting her skin from that as well.

The neurologist visit went well at Duke- as usual she checked out just fine with everything.  I spoke with him some about the long list of diagnoses on her chart to see if he could clarify some of those big words for me… Basically, at this point, Harper is considered to be epileptic simply because she has had so many seizures.  In her case, she doesn’t have seizures because she has epilepsy- she has seizures because she has brain cysts and hydrocephalus and areas of brain trauma, so she has epilepsy because she has seizures.  In addition, she has a tendency to have what they call “status epilepticus,” which means a seizure lasting longer than fifteen minutes.  She has had a few of these, and they are life threatening, so her seizures have to be treated with urgency because she has shown that once she gets started it can be very difficult to stop.

As of right now, the combination of medications Harper is on seems to be working well, so we are staying with it.  However, we did discuss two small changes.  First, he prescribed another medication for us to use on an as-needed basis.  This one we can use for a few days when Harper is sick or when we see those signs of a big seizure coming to help prevent major issues since illnesses so much lower her threshold for fighting them off.  The second change was the best news of the whole trip- he said that he would send our “sprinkle” medicine to a compounding pharmacy!  We were so excited about this- Harper does great with liquid medications, but this one sprinkle tablet has been a constant source of stress in our home for months now.  However, once we got back home, we learned that our insurance will not cover the compounding.  We have decided to pay for one month out of pocket to see how well she takes it, and then take it from there.

So, an eventful week… We stretched our limits a little too much as she did so well and learned that we have to back way off again.  She just seems to catch germs so easily, and then when she catches them she gets pretty sick pretty fast and holds on to it for a while.  It can be so deceiving- she is so wild and happy and full of life and you’d never guess that she has any special needs of any kind when you see her, and even we tend to forget when she does so well for so long.  But behind the scenes there are these little things that we have to remember to pay attention to- keeping her cool and hydrated, protecting her from simple things like bug bites, making sure she gets enough rest and sleep, not letting her get overstimulated, pumping all those meds, watching germ exposure, and of course always watching out for that head of hers!

We’re always learning there’s never a dull moment around here, and this week has been a big reminder to me of the importance of always praying that hedge of protection around my children.  Because no matter how hard I work to keep them safe, I can’t protect them from everything.  I can’t be everywhere, I can’t ward off all the bad things, and try as I might, I just can’t be Superwoman.  But, they have a heavenly Father who can protect them from everything, who is everywhere, who has defeated the bad things, and who is greater than Superman… So the best thing I can do is place them in His hands.


Her scars tell a story, a big story.  And I’ve always known that one day she’ll notice them and she’ll have questions and we’ll have to talk about all of the big things- how we didn’t know if she would live at all, how many times she almost died, how she had to fight so hard, how her brain looks so very different, how she has defeated all odds, how God has so miraculously worked in her and how He has used her in such big ways.

But she’s only three, and those discussions for one day seem so far away… or so I thought.  This morning as we snuggled on the bed reading her favorite stories for the umpteenth time, she suddenly stopped and looked perplexed.  “Mommy, what’s that?”  Her hands were in tangled up in her wild, wavy hair that was once dark brown but is now growing blonder by the day… Hair that has finally grown out enough to cover the tracks of scars that circle her sweet skull so that adults don’t stare at us in public any more and children don’t ask the questions that would cross everyone’s minds when they saw the markings on her head.  But the scars are still there, rough to the touch, and her fingers had found the scabbed area that the neurosurgeon had purposely left- a flap that would allow easy access in the future should they need to tap back into her brain to drain fluid.

I didn’t quite know how to answer her.  One day she’ll be big enough to understand her big story and our big God.  One day she’ll be more aware of the way her scars look- the scabs, the lines etched in her skin under her hair, the indentions in her thigh, the marks on her belly and her feet.  One day those things may bother her, or one day she may realize they paint a beautiful picture.  But today?  Today she is three, and she needs a simple answer that she can understand.  So that’s what she got.  “Baby, that’s where God helped the doctors work on your brain to make you all better.”  And with that she was satisfied.

As she grows older, she’s becoming more and more aware of things.  She’s taking note of the “boo-boo’s” on her body.  She’s becoming opinionated about taking medication.  She observes the doctors and nurses very carefully, and is starting to ask more questions.  And once again I’m learning how to navigate these waters- learning what to say and how to say it, how to involve her in her own health, how to raise her up to be her own advocate, how to keep my own emotions in check, and how to use it all to point her to Jesus.

And at the end of the day, that’s what it all boils down to… Because whether we are raising one child or fifteen, whether we have a child with special medical needs or special emotional needs or special learning needs or perfect health all the way around, we have a couple of things in common. One, we all have scars of some kind to deal with.  They may be visible, or they may be hidden, but everyone has something.  And two, we all have the same end goal- pointing others to Jesus.  So whatever scars we have, or our children have, seen or unseen, let’s use them to tell the story of redemption and mercy and grace.


This has been a strange week of adjusting for us.  Earlier in the week we noticed some swelling and redness in one of Harper’s feet that began to spread.  I thought maybe she got bit by something, but as it turned out she had developed cellulitis.  We don’t know if it started from a bite she had before or if it came from the multiple IV attempts they made in that foot in the ER last week, but at any rate, we added antibiotics to her daily medicine diet.

When we are asked how Harper is doing at this point, the answer is, “Good.”  We have made it a week now with no seizures, so that is awesome.  However, no seizures comes at a cost- all of those meds. This new combination has greatly altered Harper’s moods.  She is back to being very cranky and aggressive.  She cries- a lot- and hits and throws things and becomes very defiant.  I know that she’s three- I’ve survived two other girls through the terrible three’s!  This is different.  She’s pretty tired most of the time, but is having a more difficult time falling asleep again, and is fairly restless when she does sleep.

We spend a good portion of our morning and evening trying to get the meds in her, particularly this week since we’ve added an antibiotic twice a day- that means she has to take two syringes of medicine plus two capsules of sprinkles, all twice a day, and she hates all of it.  She also has a very decreased appetite and doesn’t care to eat much of anything, even yummy stuff, so we don’t have a lot of options with hiding her meds in her food right now.  So we are back to brainstorming ways to get things in her, and dealing with the screaming and fighting (and having it spit all over us) when we just have to force her to take them.    I always thought medicine was such a simple fix for a problem, but between the battle to take it and the side effects of it, it’s anything but simple.

So, that’s where we are as we approach the weekend.  Feeling so thankful for no seizures and no damage from this last one, and adjusting to new normals of medication routines and unpleasant side effects and finding that balance between living and protecting her from germs (and keeping her from hurting other kids as her body adjusts!).

There have been moments this week where I have felt sad, frustrated, overwhelmed, and even lonely… But praise God, they were just moments.  Those moments come and then they go, and I’m left with the peace that surpasses all understanding- that comfort of a loving Heavenly Father who is with me through it all, who has yet to forsake me, and who never fails or disappoints.

The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.   -Zephaniah 3:17

The struggle is real

Tonight I snuggled up beside my littlest in the dark, turned on some praise music, and watched her fall asleep, her chubby arm draped across my chest, her head nestled just under my chin.  And as I breathed her in and prayed over her, the tears came once again, as they have so many times this week.

In the dark as my tears fell, my prayers over her turned to arguing with God.  Because here’s the deal- I don’t feel strong enough for this journey.  Sometimes I feel certain that God must have chosen the wrong girl to walk this path.  As this cycle continues day after day, month after month, year after year, my flesh grows weak.  Not only do I not understand why my daughter has to go through these things, but I don’t understand why He thinks I’m strong enough to handle them.  The demands are draining, the worry is wearisome, and the emotions are exhausting.

BUT- the Savior is sufficient.  As I found myself in the pit of despair for the umpteenth time, I heard Him whisper, “My grace is sufficient for you, for my strength is made perfect in weakness.”  I don’t have to be strong, because He is.  I don’t have to carry this load, because He does.  And I’m not alone, because He is there every step of the way, leading me, holding my hand, and picking me up and carrying me when I can’t seem to take the next step.

I felt compelled to share the darkness of this journey- so often I get told that we are so strong and have such great faith… But the truth is, we struggle.  There are very hard days.  Sometimes the night seems to last forever.  I cry all. the. time.  I don’t ever want to mislead anyone into thinking that I am some kind of superhuman who can take anything and never stumble- Y’all, I am a hot mess these days!  But God loves each of us in the state we’re in- the more of a mess we are, the more grace He bestows.  He forgives me when my faith falters, He picks me up when I’m in a sobbing heap on the floor, and He holds me close when I’m terrified of what tomorrow holds.  He’s real, He’s ever present, and if our journey can be used for anything, I hope that it reveals the amazing grace of a loving Savior who has plans for you.  ❤️

(By the way- listen to this song… Amazing lyrics- He is for us, not against us… He makes us brave)