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.

Wrong.

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 🙏🏻

Family year planning…

So, it’s a new year.  Hey, it’s even a new decade!

With all of this newness comes a lot of planning and goal setting, particularly if you’re a mom.  Even more so if you’re a mom who also has a husband with a “regular” career, a military career, and a ministry- who also has three children, the oldest of whom is in high school getting ready to start college courses and wants a job and the youngest of whom has special needs- who also has a career as a teacher- who also has a home to manage and friends and extended family members- who also is enrolled in graduate school- who also wants to prioritize her walk with the Lord above all else.  I don’t know about you, but all of those “also”s stress me out just a bit!

There can be a lot of pressure this time of year to organize it all and get everything straight and feel like you have it all together as you jump into a new year.  I had big expectations of myself this week in terms of the planning and organizing for everyone, but as I approached the lists and tasks there was a hesitation.  Deep in my heart I kept hearing the Lord whisper that one word He led me to as my focus this year- roots.

If my focus for the year is on roots- getting back to my roots, extended my roots, strengthening my roots- what does that look like for our family?  As we put the calendar together and map out our year and set our goals, what do we need to prioritize to ensure that we are rooted where we need to be?

The Word.

Yes, there are lots of goals we can set for our family this year.  We can dream big and work hard and move mountains, but at the root of it all must be a commitment to the Word of God.  I want my children to know the Word.  I want my children to hear the Word.  I want my children to read the Word.  I want my children to receive the Word.  I want my children to do the Word.

My heart’s desire is to cultivate discipline, respect, and love for the Word of God.  To do that, I must have discipline, respect, and love for the Word of God.  It has to be a priority every single day.  My children need to see me in the Word, and our conversations need to be seasoned with the Word.  We need to be speaking it around our dinner table, praying it over one another, and embracing it in every aspect of our lives.

And it’s not enough to just tell my kids to read the Bible.  It needs to be modeled for them and taught to them.  They need direction.  They need guidance.  They need encouragement.  They need to know that it matters and that I care more about their spiritual well-being than anything else.  Their love for God is more important than their social status, their academic success, their hobbies, their sports achievements, or anything else that tries to take precedence in their lives.  I am more concerned for their souls than their success.

So to bring that point home this year, I set the calendar and to-do list aside today and put together a family Bible-reading plan.  Now, I know there are lots of plans already created out there, but I wanted this to be personal and relevant for our family.  I want it to be enjoyable, so I’m not pushing everyone to read the entire Bible in one year.

Instead, I asked my girls to tell me what books of the Bible they wanted to read this year.  From there I put together a daily reading plan that will take our family through about half of the books of the Bible this year.  There is an assigned passage for each day of the year, and we read the daily passage on our own.  This gives my girls a starting place for studying God’s word on their own, and also provides some structure and accountability.  Life is busy, and the reality is that we rarely have time to all sit down and read the Bible together and have a dedicated family worship time.

But with this we at least have the opportunity to start conversations.  We can check in with one another.  We can talk about that day’s reading in the car or over dinner.  We can ask questions and relate the passages to what’s going on around us.  It can be as in-depth and involved as we need it to be on any given day, but is simple enough to not cause stress or overwhelm anyone.

My prayer is that this works for our family this year.  I know I’ll have to tweak things as time goes by, and my technologically advanced children will probably take the plan and put it on their devices while I continue along with my pen and paper checklist, but the goal is to promote that discipline, respect, and love for the Word, as well as unity of heart within the walls of our home.

That’s my big idea for 2020… I’d love to hear what works for your family!

Roots

Being the lover of words that I am, I get really excited each December to choose my one word for the next year.

Last year, my word was “fresh.”  I wanted a fresh heart, ready to receive God’s word and His goodness, and it was a year of “fresh” in so many ways.  Our family experienced a lot of changes and we entered new seasons of life, and in it all I did indeed see the goodness of God in fresh and new ways.

As this year ended, I thought I already had my one word narrowed down to a couple of different options, and this morning I sat down with my journal and my Bible, prepared to pray and seek and settle on one of those words.

But, much to my surprise, God led me in an entirely different direction, as He so often does.  How many times do I think I have it all figured out, just to find myself at His feet in a blubbering mess, once again shocked to hear what it is He’s saying to me?  Ummm… too many times.

Anyway, I have just started a study on the book of James, and I am going through the book verse by verse.  Today I hit James 1:21, which says, “Therefore put away all filthiness and rampant wickedness and receive with meekness the implanted word, which is able to save your souls.”  I’ve read that verse multiple times and I’ve taken note of the putting away and the receiving, but today my heart stopped on that word implanted.

Bear with me here as I chase the Lord down this rabbit trail.  So, according to Webster’s dictionary, this word implanted means “to fix or set securely or deeply; to set permanently in the consciousness or habit patterns.”  Therefore, when I received the word of God as truth, it was securely, deeply, and permanently set in me.  In other words, it was ROOTED.  If something has been implanted, it has taken root.

Now the Bible says a lot about having strong roots and being rooted in Christ.  There is the parable of the sower and the seed found in the Gospels.  Colossians 2:7 speaks of being rooted and built up in Christ.  The first Psalm talks about being like a tree planted by streams of water.  In Ephesians we see that we should be rooted and grounded in love.

But this is the passage that the Lord led me to today that solidified my one word for 2020: “Blessed is the man who trusts in the Lord, whose trust is the Lord.  He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit” (Jeremiah 17:7-8).

ROOTS.

That’s my one word for 2020.  After my year of fresh, it’s time to circle back around and focus on my roots.

Roots tangled up in trust.
Roots by the stream so that there is NO FEAR when the heat comes.
Roots that provide sustenance so there is no anxiety when all seems dry.
Roots that keep me grounded in my identity in Christ.
Roots that hold me upright when the winds of the world try to knock me down.
Roots that hold my family tree in place, so my children know they are loved and cared for and created for a purpose.
Roots that withstand the trials of time.
Roots that press down and press out and press on to grow stronger and stronger.
Roots that extend deeper and deeper still to grow a tree that produces fruit in all seasons.
Roots in Christ.

 

 

So long, 2019.  2020 is taking me back to my roots.

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)