My heart has been so heavy lately as I have seen my brothers and sisters in Christ struggling so incredibly under the weight of this world.  Y’all, Satan is real, and he is attacking God’s people at every turn, and it’s hard and it hurts and it just plain stinks at times.

As I’ve been watching my dear friends tread dark water and as we’ve been battling some shadowy places of our own in our home, my soul has grown heavier and heavier and heavier.  I don’t like the dark.  I don’t like the unknown.  I don’t like pain and sadness and despair. And I sure don’t like feeling helpless in the midst of it all- I want to fix things.  I want to do something, to make everything okay, to somehow rectify all of this brokenness I see.

But I can’t.  So, I’ve resorted to the only thing I know to do- hit my knees in prayer.  Isn’t it ironic that the lady who is always praising the power of prayer actually uses prayer as a last resort?  That I exhaust all of my efforts to do and fix and then I pray?  What a wake-up call to my own sinful nature…

But still, what peace there is in prayer.  I’ll admit, I struggle with many aspects of my prayer life.  It’s hard to find time with a house full of little people to sit down alone and talk to God for an extended period of time.  And then when I do pray, my mind wanders and I lose my train of thought and I find myself without words and then I feel like I’m failing somehow.

That being said, in this season of struggle, here are some things that have helped grow my prayer life a bit- well, things aside from the overwhelming need for conversating with the God of the universe.

First, I’ve been involving my children.  Instead of feeling like I need to go hide away to pray, I let them see me pray.  And when they walk in and ask what in the world I’m doing, I tell them- and even ask them to join me.  When we’re struggling in our home, I pray for them out loud so that they hear me.  In this season of life, they are with me all the time- so why not make them a part of my prayer life and maybe encourage those habits in their own lives?

When a prayer need arises, I’ve also learned to stop and pray right then.  I used to be guilty of telling people I would pray, but then forgetting to actually pray.  So now I do it on the spot- and then again later as I remember.  I’ve also discovered the beauty of cell phone alarms to remind to pray at specific times for specific needs that have been shared.  (Sometimes technology can be used for good!)

Now, as far as my mind wandering?  I am a words person- but written words, not spoken.  So I have found a prayer journal to be a huge asset to my prayer life.  Now, I’m not one of these uber organized people with lists and schedules and all that in my prayer journal- but when I sit down to talk to God and pour out my heart, I can write out my words and it keeps my mind and heart focused on Him.  And when I can’t find words?  He has provided them in Scripture.  Sometimes praying God’s word instead of my own is the best prayer.

This world is crazy.  There’s a lot of darkness.  There’s a lot of hurt.  Sin is real.  The devil is real.  But so is GOD, and we battle best when we’re on our knees, surrendering to His will and way, recognizing His power and sovereignty, and letting Him fight for us.

The Lord will fight for you; you need only to be still.  -Exodus 14:14

Then you will call on me and come and pray to me, and I will listen to you.  -Jeremiah 29:12

Be joyful in hope, patient in affliction, faithful in prayer.    -Romans 12:12

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.                -Philippians 4:6-7

  
My sweet girl, I’m laying here beside you, basking in the glory of nap time, a blessing I do not take for granted these days!  You’re snoring away- it’s not a sweet, gentle, ladylike snore, but a deep, manly growl of a snore, and it makes me laugh because it doesn’t fit that angelic face marked by rosy red cheeks and long dark lashes.  Your chubby hands are holding on to that blanket that’s wet (and, quite frankly, gross) from being in your mouth, because although you are now a big three year old, you still insist on shoving half a yard of muslin cotton in your mouth to fall asleep.  

As I watch you rest, I feel an overwhelming sense of peace- it’s the peace that comes from knowing Who holds you in His hands.  This day three years ago was one of the hardest of my life- I rejoiced in hearing your fiesty cry for the first time, and seeing your beautiful face that seemed so very perfect… But you were gone in no time.  I had a brief moment to look into your eyes, and as they took you from me I knew there was a chance our eyes might not meet again.  And my heart shattered into a million pieces. 

In those moments I learned what it is to accept that our children aren’t our children, but ultimately His.  Because as my brand new baby was taken from my womb and flown hundreds of miles away from me, she was completely outside of my protection.  I could do nothing for her- except pray, and trust the One who formed her.  

Our God has used you in mighty ways these past three years, Harper.  You’ve given me a lot of scares, a lot of tears, an enhanced medical vocabulary, worries and anxieties I never knew possible, and a lot of gray hairs and wrinkles… But you’ve also given me a new purpose in life, a renewed focus on what matters, a stronger faith, a reminder of true hope, an endless source of joy.  

I don’t know what the journey holds for us in the next three years, but I know Who does, and I know His plans are for our good.  I’m forever grateful that He chose me to be your mom.  Happy birthday…

On February 12, 2013, my life changed forever.  I didn’t know when I woke up that morning that by the day’s end nothing would ever be the same.  And as the events of that day unfolded into the events of the following days, and weeks, and months, I still did not realize what any of it would mean, or just how much my life would change.

It was on that day that I received the most devastating news I had ever received- the baby girl I had carried in my womb for the past 37 weeks was not as “perfect” and healthy as they had thought.  They had missed something huge, and that something could cost us her life.  In fact, chances were probable that she would not survive.

There are no words to express the thoughts and feelings that come in those moments when everything you know is ripped from you and your faith is shaken to the core.  We all know that we never really know, that life is full of uncertainty and anyone’s life could change in an instant- but we just don’t truly fathom what that means until that instant hits.

It’s been three years now, and yet it feels like an eternity ago.  It’s hard to remember what our life was like before our little fighter came along.  It’s difficult to recall a life without doctors and medications and brain scans… before I knew about hydrocephalus and brain cysts and porencephaly and seizure disorders… a time in which we did “normal” things without thinking about how it would affect our youngest… when we spent time away from our kids without worrying over what might happen while we were gone… when we slept through the night in our room without a child… when I had a career and we were on the go all the time and stayed so, so busy… when we took so much for granted and didn’t really count the gifts in each day, didn’t personally realize the healing strength of our great God, neglected to celebrate the power of prayer.

Yes, life looks drastically different now.  That day three years ago turned everything completely upside-down and sent us on a ride that we could have never imagined being on.  I had no idea of the path God was preparing us for.  This week is always a tough one for this mommy’s heart as I reflect on the start of this journey and all the uncertainty it holds… but it’s also a time of refocusing my attention on the One who knows all the how’s and whys and whose plans are always for my good.  It’s a time to remember the bad but rejoice in the good He has brought forth from it.  It’s a time to let go of the worries and fears and celebrate the miracles… Because three years later, I spend my days with a vibrant, joyful, precious little girl who loves life and keeps us laughing, and I couldn’t ask for more.

  

It’s been almost a month since I’ve posted on the blog.  Life has been happening at full force.  My husband has been away for 23 looong days so far, leaving me to be a single, full-time, homeschooling mom of three wild girls (who have decided to boycott sleep).  I. am. TIRED.

That being said, here’s the latest from our world.  My oldest has some emotional/mental stuff that we are processing and working through.  My middle is just missing her daddy like crazy and therefore acting like a wild, nocturnal animal.  And the littlest has fully weaned off of her previous seizure medication and is now relying solely on a once-a-day dose of her new meds, which she is not a fan of taking.

We had hoped that this transition would eliminate the small breakthrough seizure activity that we had started to see, but that is not the case.  She has had at least four small seizure episodes in the past month.  I say “at least” because that is what I have personally witnessed- most of them come during her sleep, so I don’t know that I am catching all of them.  And I say “episodes” because sometimes it is a single seizure, and sometimes she has multiple short seizures over a period of time.  The good news is that these seizures have been short and mild, so the medicine is helping in that respect.

Her behavior has improved slightly with this new medication- I’m not seeing as many screaming spells, but I am still noticing a little sensory sensitivity in certain settings, and she is still struggling with interacting with other kids her age (she doesn’t get angry or yell or anything, but randomly hits and scratches for no apparent reason).  Oh- and she is napping again!  This is a huge praise.  She still seems to have disruptive, restless sleep at night, but she is taking afternoon naps again, so that has been a huge blessing.

I have contacted her team at Duke regarding the more frequent seizures- it’s still on average just once a week and they’re small and not requiring medical intervention to stop, but they’re still scary as there is always the fear that they’ll become more intense.  And these are new- we made it almost two years with no seizures, then almost another year with no seizures, so the jump to four a month concerns me a little.  She has also started complaining this past week of headaches and has told me on three separate occasions that she has “sprinkles” in her eyes (“sprinkles” is her word for anything that is shiny or sparkly).  It may be nothing, or it may just be what we have to deal with, but for now I am being “that mom” and bringing it all to the doctors’ attention.

So, that’s what’s been happening over here… I wanted to post an update since the last time I posted I asked for prayers regarding this medication switch.  We are always thankful for our tribe of prayer warriors out there!

I’ve been weathered these past couple of years.  I see it when I look in the mirror- the gray hair shining more and more, the worry lines deepening across my forehead, the circles around my eyes growing darker by the day.  There’s constant lack of sleep, lack of time for things like working out, and lack of funds for trips to the beauty salon.

But the weathering isn’t just skin deep… There’s been an aging of my mind, my emotions, and my soul.  The things that once consumed my mind seem so irrelevant now as I learn about brain cysts and hydrocephalus and seizure disorders.  My days are spent monitoring medications and side effects, and scheduling appointments and arranging payments… All the while fretting over spending enough quality time with each child.

My emotions run rampant and the girl who used to be so strong and void of emotion now weeps at the drop at of a hat… Because life is just so precious and short and we take so very much for granted… Because so much time is squandered and so much pain inflicted and so many opportunities wasted and some days it just makes my heart ache.

Yet I’ve been forced to grow thicker skin, to toughen up and let go of insecurities.  I see the staring when my daughter has reached her limit and simply cannot control herself any longer, when things as simple as getting in or out of a car seat or riding in a cart or wearing a jacket become sources of angst.  I see the whispering when I allow her to dance beside our table at dinner because I want to finish my meal without having to drag her out screaming and hitting.  I get the judging- I’ve been on the other side, not understanding another’s parenting skills, thinking my child will never… But now I know that nobody knows the battles we face. All of us moms are just trying to make it, trying to do the best job we can.

No, I’m not nearly the same person I was ten years ago, or even 10 months ago.  Priorities have shifted, lessons are being learned, and my dreams look quite different than I ever imagined.  Life has brought challenges- but despite it all, I say, “Challenge accepted.”  Because these challenges, these trials, this hard season that isn’t getting any easier as seasons change… It’s all for a purpose.  God is using it to define my belief, refine my faith, and confirm my reliance on Him.  Being uncertain and incapable humbles a person- and magnifies a great God who is both omniscient and omnipotent.  Losing control and becoming powerless gives glory to the One who holds all time in His hands.  

So bring on the weathering, bring on the challenges… I can’t handle anymore, but my God is more than able.

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.  -Romans 5:3-5

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  -II Corinthians 12:9

In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that the proven genuineness of your faith- of greater worth than gold, which perishes even though refined by fire- may result in praise, glory, and honor when Jesus Christ is revealed.  -I Peter 1:6-7

Our Duke trip was productive!  As usual, Harper was amazing… She smiled and laughed and bounced, did everything they asked, and checked out just fine.  We went over her last seizure with the neurologist, and after consulting with an epilepsy specialist, the decision was made to change her anti-seizure medication.

Any changes like this have both good and bad considerations.  This new med has different side effects than her current med- it does not cause the mood and temperament issues that we’ve seen, and it actually tends to make people sleepy (yay!).  However, it does decrease appetite (and she already doesn’t eat much), and it only comes in a capsule, which means we have to open it and sprinkle it on her food and get her to eat it all. (Slightly ironic given that it decreases her appetite 😕).  

I’m thankful that the doctor took our concerns seriously and is being proactive, but also slightly nerve-wracked to change what we know works.  We know that her current medicine does a good job of controlling the frequency of her seizures, and it’s the only one that’s ever been used on her, so we’ll be on pins and needles as we watch this transition over the course of the next month.  However, as she had a mild seizure in her sleep last night after our busy day, I feel more certain that it’s time to make the change.  

This journey is one full of twists and turns, one full of worries and fears, long nights, and uncertainty.  But it’s also one of such treasure and joy- watching this miracle that wasn’t expected to do anything bounce down the hospital halls, pointing out colors and shapes, listening to her talk and sing, so curious about the world around her- it’s a gift.  And feeling God’s presence in such a real way, watching Him work on a daily basis, and learning to trust His plan, His way, in His timing- that’s the biggest gift.

  

Today I’m preparing for a Duke trip tomorrow.  And when I say preparing, the preparations aren’t the usual preparations a mom makes for a trip.  In fact, this is just a day trip- go up, have our appointment, come back.  It should involve little prep work.

However, for me, these trips always require some extra mental and emotional preparation.  It seems quite surreal that visiting Duke hospital is such a normal thing for us now, such a standard part of our routine every few months, whereas three years ago I had never been anywhere near it.  I always think back to the first trip I ever took to the medical facilities in Durham- 37 weeks pregnant, rattled by the news that my baby may not survive, trying to find some kind of rest in a hotel room before meeting with a special medical team to discuss our options.  And then just two weeks later making that trip, uncomfortable from the recent c-section, having not laid eyes on my newborn for four days, and scared to death of what I would see when I arrived.

Praise God, tomorrow I’ll drive up with a wild, chatty, full-of-life two-year-old.  It won’t be a quiet ride and I won’t have that strange void like part of me is missing.  What a blessing!  (And I’ll need to remind myself of that blessing many times as we travel tomorrow and that little blessing gets tired of sitting in the car seat!)

I just have to prepare myself for the emotional drainage that comes from visiting a children’s hospital.  The smells and sounds that remind me of the darkest legs of our journey.  The people around us who may be walking the darkest legs of their journeys.  Facing full-on the fears of what could have been or what may come.  Bracing myself for doctors who tell me so much is still unknown about my daughter, or there’s nothing they can do.  Reminding myself to celebrate all the things she is doing that they once said she may never do.

I have my list of questions and concerns ready, as this is our first visit with her neurologist since her seizure last month.  It sometimes seems odd to worry so much over someone who has seizures so infrequently- but what so many people don’t realize is the severity of those infrequent seizures.  They are long.  They are dangerous.  They are life-threatening.  And we never know when they will come or if they will stop.

At this stage of the game, one of our biggest concerns to address is her medication.  In less than a year, her dosage has almost quadrupled.  (And one year ago, she wasn’t on anything at all).  She is really on a high, high dose of this particular medicine, and her weight has not changed much over the past year to warrant so much of change in dosing.  Her appetite is hit or miss, and her sleep has become even more of an issue.  She does not nap, she stays up late, gets up early, and does not sleep through the night.  When she does sleep, she is extremely restless.  She hits and kicks in her sleep, often cries, and has started occasionally having some type of night terror in which she flails and screams inconsolably.  We are all exhausted.

There are also some behavioral changes we’ve seen, but those are harder to pinpoint.  They could be a mental thing, they could be a medicinal side effect, and they could just be the terrible-twos.  It’s hard to tell at this point.  She’s grown more impulsive, running from us, jumping off of beds (and getting hurt), throwing things, etc.  She doesn’t handle going out in public very well, and gets uneasy in overly large crowds with lots of noise.  She enjoys people and is social, but if it gets too loud or too crowded, she gets anxious.  We’ve been learning to try to recognize her cues, and limit how much we do- fewer excursions and shorter time spans, and being flexible if we simply have to stop and go home.

That being said, we hope to gain some insight tomorrow.  We appreciate your prayers for safe travels, happy travelers, and a productive visit with the neurologist.  (And also for a calm spirit for Mommy!)

  

It’s the start of a new year, so time to make those resolutions…. Here’s a few of mine:

More reading.  Less watching.

More acting.  Less hesitating.

More doing.  Less sitting.

More living.  Less waiting.

More learning.  Less regretting.

More listening.  Less talking.

More seeking.  Less wandering.

More appreciating.  Less complaining.

More leaping.  Less cowering.

More forward.  Less reverse.

More giving.  Less taking.

More understanding.  Less demanding.

More growing.  Less shriveling.

More kindness.  Less wretch.

More embracing.  Less avoiding.

More music.  Less noise.

More patience.  Less yelling.

More value.  Less waste.

More trying.  Less quitting.

More refining.  Less defining.

More mercy.  Less self-righteousness.

More humility.  Less pride.

More grace.  Less comparing.

More trust.  Less fear.

More forgiving.  Less running.

More loving.  Less judging.

More of His Word.  Less of my own.

More of Him.  Less of me.

Here’s to 2016… May we all long for a year of growing and learning and refining- a year in which the greatest joy and blessings come not through material gain, but through drawing closer to our Savior in whatever circumstances come our way.  ❤️

Thirteen.  We have survived that many years.  We have beat the odds.  We have overcome.

I look back on that cold Friday night thirteen years ago and I have to laugh.  Me, still in college.  You kicking off a brand new career.  We thought we had it all figured out.  No money, no clue, but we had love and a beautiful wedding and lots of big plans.

No, we didn’t know the depths of the pain we would feel in thirteen years.  We didn’t know the struggles that would come… Bills, illnesses, surprise babies, temptations.  There were long seasons of wandering in the dark and losing our way.  Seasons of heartache and tears, of anger and bitterness, of sadness and fear… What-ifs and maybes and maybe-nots.  So many opportunities to give up, to walk away, to let go.

And when we hit the bottom of the pit there was nothing to cling to except Hope- Hope in the person of Jesus- and it was there we found redemption… and love, and grace, and mercy, and forgiveness, and restoration.  It was there we found all that we ever needed… and it wasn’t you or me or anyone else- it was Him.

Our life isn’t quite the fairy tale we envisioned on our wedding day… But it’s a beautiful life.  We have had to struggle and fight for what we have. We have endured hardship and persevered through trial.  We work at it- every day.  As we have raised children and prayed by hospital beds and accepted a different way of life than we ever imagined, we have made the most special team.  We know what it’s like to almost lose it all, and we understand the gift we have in each day.

So, as we embark on another year together, I look back at our past- the good, the bad, and the ugly- and I thank God for it all.  Because as I once looked back and wished I could erase some of the not-so-beautiful moments, I now realize that I needed that dark to appreciate the light.  I learned that God does indeed work good for those who love Him, but sometimes that good sprouts from the mud and the muck.  Here’s to another thirteen years (and more) of loving and learning and growing closer to Him…

  As Christmas is upon us, I’m ashamed to admit that I just haven’t been feeling the Christmas spirit this year.  The decorations are in place, the gifts are wrapped, the tree has been decorated for a third time (a story for another day), the cards have been sent… But instead of the usual excitement I find myself feeling a bit weary.

Perhaps it’s just the normal busyness of the season… or the worrying and fretting over Harper this past week… or the reality that her condition will remain a scary, uncertain thing… or the fact that, aside from one hour, she and I have been attached round the clock for ten days now… or the piles of bills I have hidden in the drawer… or the concern over issues we have going on with our oldest daughter behind the scenes… or, or, or… I could go on and on (as could most everyone else these days!).

The bottom line is, being a parent is not an easy job.  And as I was thinking on all of that this morning, I started thinking about Jesus’ mom, and the task that she was given.  She was the young, virgin mother of God’s Son.  She faced ostracism and judgment as an unwed, pregnant girl.  She had to leave her home.  She gave birth in a stable.  She had visits from angels and wise men and shepherds.  She had the pressure and responsibility of raising Jesus, the Messiah- can you imagine?  Yet in the face of all this uncertainty, Mary made the choice to praise God for Who He is….

And Mary said: “My soul glorifies the Lord and my spirit rejoices in God my Savior, for He has been mindful of the humble state of His servant.  From now on all generations will call be blessed, for the Mighty One has done great things for me- Holy is His name.  His mercy extends to those who fear Him, from generation to generation.  He has performed mighty deeds with His arm; He has scattered those who are proud in their inmost thoughts.  He has brought down rulers from their thrones but has lifted up the humble.  He has filled the hungry with good things, but has sent the rich away empty.  He has helped His servant Israel, remembering to be merciful to Abraham and His descendants forever, even as He said to our fathers.”  -Luke 1:46-55

Even though Mary had quite a journey ahead of her as a mother and her life wasn’t going quite like what she had envisioned for herself, she was humble before God, and even rejoiced in Him.  She didn’t complain or ask why.  Instead she recognized that He is holy and mighty, and that He was working out His perfect plan.  Nothing was about her- it was all about Him.  She found comfort in remembering His promises and the great things He had already done, and remained a faithful and obedient servant.

I can’t imagine motherhood being anything less than challenging for Mary, just as it is for me- although for very different reasons.  How do you teach and train and discipline the Son of God?  How do you walk through your days knowing your child will bring salvation to the world?  And how do you hear the words prophesied about your baby and not live in fear?  That can’t be easy.  Simeon even told Mary that “a sword will pierce your own soul, too,” foreshadowing the anguish that was to come.

Yet Mary continued.  She remained steadfast and true, raising Jesus with a calm and gentle spirit.  She held on to the truth about her Son, and “treasured [it] in her heart” (Luke 2:19 and 2:51).  What an example for me as a mom… to stay calm, to remain faithful to God in adversity, to rest in His word… To be a mom like Mary and treasure the good things in my heart while trusting God with the rest.

We live in a weary world, full of fear and worry and unknowns.  The days are long and hard, trials abound, and Satan would love nothing more than to steal our joy this Christmas season.  But just as God was working His plan in Mary’s times of turmoil, He’s working His plan today.  Because that baby that He sent through that young mama in a stable?  He went on to save the world.  He grew up, He lived among men, He gave His life freely for you and for me, and He conquered the grave.  In the midst of uncertainty, hope was born.  In what seemed like the darkest of nights, light sprung forth.  From the grave, life arose, and the greatest battle for all mankind was won.  That, my friends, brings a joy that Satan can never steal away.

As we celebrate the birth of the Son of God this week, may we all push aside the worries of the world and instead marvel in the wonders of the Messiah.  Weary world, rejoice!  The Savior has come, and He reigns forevermore!