My emotional breakdown came last night.  The adrenaline rush from Friday’s events had ended, and we had spent the day at home, resting and recuperating.  Everyone was settled for bed, and I was enjoying snuggles with the baby girl… And I took notice of the bruises on her arms and legs, the result of their frantic attempts to gain IV access the day before.  I saw the scars on her head and her stomach from her earlier days of fighting, marks that will always be there to remind us of her battles.  She looked up at me with heavy, darkened eyes, eyes that had once been so big and bright and sparkling, but are now weary and drawn and dim.  And I melted into a pool of misery.  I wept and I got angry and I told God how unfair it all is, and I begged Him to make things easier, or at least make me understand.

I say that to be very open about this journey we’re on.  I’ve heard people comment that I’m so strong and my faith is so steadfast- but I don’t feel that at all.  I struggle.  I cry.  I get mad.  I ask, “Why?’ more times than I can count.  It hurts my heart to see my daughter struggle, and the periods of crying and uncontrollable mood swings that follow her seizures are beyond exhausting.  I have days of feeling absolutely overwhelmed when I can’t make her happy, guilty for the lack of time I have to devote to my older girls, stressed over the medical expenses and not being able to work outside the home, afraid of all the unknowns that we are faced with, confused that my life looks so different now… lots of “yuck.”  Granted, I can see God at work, I see the miracles He has performed, He has never left us in this journey, and I have much to be thankful for… But there are moments that I just don’t get it.

Today as I battled the after-effects of my pity party and all the emotions running rampant, I sought solace in God’s Word, and found myself reading 2 Chronicles 20.  In this passage, Jehoshaphat gets word that an army of enemies is headed their way- and his first response is to call on God.  Jehoshaphat stood and prayed the most beautiful prayer, and as I read it, I realized that this indeed is the prayer of my heart today.

O Lord, God of our fathers, are you not the God who is in heaven?  You rule over all the kingdoms of the nations.  Power and might are in your hand, and no one can withstand you…. (Verse 6)

If calamity comes upon us, whether the sword of judgment, or plague or famine, we will stand in your presence before this temple that bears your Name and will cry out to you in our distress, and you will hear us and save us… (Verse 9)

…For we have no power to face this vast army that is attacking us.  We do not know what to do, but our eyes are upon you. (Verse 12)

You see, I find myself feeling quite a bit like ol’ Jehoshaphat.  The Lord had brought them so far, kept His promises, and life was good… but BAM!  Here comes the enemy again, and it looks hopeless.  But here’s where I learn from this king… His first response is to call everyone to prayer.  And in his prayer to God, He recognizes Who God is, pledges His allegiance to Him no matter what may come, and then proclaims, “We do not know what to do, but our eyes are upon you.”  When I don’t know what to do (and I certainly do not these days!), my eyes need to stay focused on Who God is, commit to trust Him, and let Him lead.  Because as Jehoshaphat looked to God, God answered his prayer…

This is what the Lord says to you: “Do not be afraid or discouraged because of this vast army.  For the battle is not yours, but God’s.” -2 Chronicles 20:15

Ah, what comfort there is in knowing that the battle belongs to the Lord!  It’s not my battle to fight.  I don’t need special weapons or super strength.  I just need to trust.  Is that easy?  Absolutely not!  But when I’ve hit the bottom of the barrel and feel that I just can’t do anymore, I have to trust the One who holds all things.  I can rest in His arms, knowing that He is going before me, and that the victory is already won.

We were late to our check-up at the doctor, and we battled over socks.  You see, my littlest is on this color kick- everything is identified by its color… The yellow chair, the red shirt, the brown floor, the white door, and, on this day, the blue sock.  But, the blue socks didn’t match her Christmas shirt and hair bow, and I pleaded with her to wear the socks that matched. 

Well, this one is a fighter, stubborn and strong-willed, and I lost the sock battle.  We donned the blue socks and rushed to our appointment, where she showed off and chatted and danced and was full of life.  We reviewed her medical records, marveled over the miracles, and returned home with a perfect bill of health.

Back home, she snacked and played with her sisters as mommy cleaned house and checked messages- one from a friend saying I had been on her mind and she had been praying for me.  The sun shined, the girls giggled, and life was a perfect normal.  But (there’s always a but), as I passed through with my basket of laundry, I noticed her alone, crouching by the front door. I called her name and she looked at me, but her response was slightly delayed.  I walked over and checked on her, and she seemed fine, so I went about my business.  However, a few minutes later I realized she was still there, sitting by the front door, not moving.  This time when I called her name, there was no answer, no response.

She was having a seizure- which I should be well prepared for.  If you’ve seen her brain scans, you’d be surprised that she doesn’t seize more than she does!  But, it has been almost a year since we’ve seen a real seizure in her, and she had just been so completely normal all morning.  I called my oldest to start watching the clock for me, and I got on the phone, calling for backup just in case.  I will admit, I was eerily calm, but I was in denial.  This seizure didn’t look like what I thought seizures looked like, and I truly did not want to believe we were dealing with that.  But, after timing for seven minutes, I knew we had to call the paramedics.  

There was a lot of confusion as we made our way to the hospital and got checked in.  She was not convulsing, so initially no one was sure if she was indeed still seizing.  They were hesitant to treat her as a result… But then she went into a full-blown, grand mal seizure and there was no doubt.  They battled to get IV access as we prayed over her, and by the time they gained access it took two rounds of heavy duty meds to stop the seizing.  That episode lasted 15 minutes, resulting in over two hours of seizure activity.  
Several hours passed, during which we watched her sleep as more meds were administered and calls were made to Duke.  I was overwhelmed by texts and messages of prayers for our family… and little reminders of His hand on us even in the days leading up to this.

  As we sat in waiting, she was in and out of sleep… And the first words we were able to understand from her were, “I want my blue sock.”  Those silly blue socks became a beacon of hope as we realized that she had not lost her ability to talk and make demands!  And I had to laugh at the irony of it all- the blue socks that she insisted on wearing were the only part of her wardrobe that survived the day.

  Eventually we were told we could take her home to rest and increase her daily medications- good news, but a decision that caused mixed emotion for this mama.  See, while I am thankful there is nothing they need to do, it can be hard to accept that there is nothing they can do.  

We’re back to the point of unpredictability.  We get settled in, life seems normal again, and then she gives us a scare.  There is always a fear that this will be the seizure they cannot stop- though they are few, they are longer and more difficult to control.  There’s no predicting when they will come, no warning signs- and they don’t even look the same each time.  And we don’t know what these prolonged seizures are doing to her brain.  So many things that we can worry over and fear, so many unknowns…

But this is yet another reminder that while there are so many unknowns, we must rest in the One who does know.  He is not caught off-guard.  He is not worried or afraid.  He formed her, he numbered her days, He designed her for His purpose, and He is still in control.  He alone is our Peace.

  Today I held the hand of my second-born as she took a giant leap of faith, going forward at the invitation at church to announce her salvation and ask to be baptized.  For an almost-seven-year old who is terrified of crowds and talking to people she doesn’t know, it was a huge step, but one she was determined she had to take today.

I’m always proud of my babies, but I was especially proud of my bluebird today because really, she set me in my place.  She actually gave her heart to Jesus several months ago, but I was very cautious about it.  I know she’s young, and I want to be sure that when she makes major decisions, she knows what it is she’s deciding.  And as much as I want my children to follow Christ and have a relationship with Him, I know that I cannot make that choice for them- they have to do it on their own.  So, while I’ve raised them to know what I believe and what I know to be true, I never really talked to this little girl about making that decision, and I was a bit surprised when she came up to me one day and informed me that she had asked Jesus in her heart.

Over the next several days I asked lots of questions, and ended up giving my daughter a complex as she felt she had to keep asking Jesus to save her.  She wanted to be sure she did it “right” and I realized what a mistake I was making!  It really is as simple as confessing and professing, and I was complicating things so much and making my child doubt her own childlike faith.  I will always remember her finally looking at me with those big, gorgeous blue eyes wide, saying, “Mommy, of course I believe Jesus is real and died for me.”

Why, oh why, do we over complicate grace?  Our human nature causes us to fail to understand that something so amazing could be offered so freely- but it is.  We think we have to jump through hoops and say the right words and pray the right prayers and go to this event and that meeting… that we have to look a certain way or talk the talk or know the right people.  We wait for perfect circumstances that never come, a perfect place that doesn’t exist, or the perfect time that may have already passed.  Yet Jesus meets us right where we are.  Grace doesn’t wait for perfection.  It doesn’t require us to have it all together.  It doesn’t even need for us to know all the answers.  It’s just trusting, believing, and obeying.

For my little girl, grace came down in the backseat of the car as she listened to songs about Jesus and knew she needed His forgiveness.  It wasn’t a complex process.  It didn’t take a committee of adults to decide for her.  She didn’t even need her mama to walk her through it.  She just surrendered to the nudge of the Holy Spirit and let Him work.  It took her a few months to build up the courage to step out of the aisle in front of a church full of people, but that didn’t make her any less saved.  And today as she told us that she knew she needed to do it, I was beyond proud to watch her overcome her fear so that she could obey God.

I am so thankful that God doesn’t leave us on our own to figure this crazy life out.  I’m so thankful that He speaks to hearts young and old, and that the message of salvation is simple enough that even an almost-seven-year old can hear it and accept it.  I’m so thankful for salvation and mercy and grace and amazing love.  And I am so thankful that my child’s faith is not shaken by her mother’s doubt and questioning, and that God uses these girls to teach me more about Him every day.

There are seasons in life that just frustrate me.  Those seasons in which things just don’t seem to be going the way I want.  Less than ideal news from my doctor, more testing for my youngest, issues with my oldest, busyness consuming our family schedule, bills to pay, homeschooling woes, a messy house… The kind of weeks that make you want to just run away until it all passes.

We took our daughter to Duke this weekend for another test- this time a sleep study to see if there is a medical reason that she does not sleep well.  As we checked into our room for the night and got ready for bed, I was struck by how natural it feels now.  We have spent so much time at Duke Children’s Hospital that there is an odd sense of comfort there.  We know our way around, Harper knows where to go to play when we get there, we know the questions that will be asked… it has become second nature.  And as I washed my hands with that lovely hospital soap that smells like sadness, I stood in the bathroom and cried.

This wasn’t a scary test or procedure this time.  There isn’t a huge sense of uncertainty as we await the results- this one is not a huge deal by any means.  But this journey we have been on the past couple of years is one that I never in a million years would have envisioned for our family.  I never thought we would be a family that makes regular trips to big hospitals, that is familiar with medical terminology that most people have never heard of, whose life revolves around appointments for scans and tests and checkups.  I never imagined having a daughter who body is marked by scars, who walks into a hospital like she owns the place, who sits patiently and allows people to poke and prod at her because it’s just what she knows.  When I look at it from my own selfish point of view, it doesn’t seem fair.

BUT, God’s plans are far greater, because I also never knew what it would be to be a firsthand witness to God’s miracles.  I never could have dreamed of how He could use a tiny little girl to change my life and my husband’s life… and how her story would remind others of His love. Who knew the relationships that would be formed or strengthened, the people we would meet, the support we would have, the prayers that would be prayed (and answered)?  This little life is a tremendous testimony of God’s healing power- not just physically, but emotionally and spiritually.

This morning as I was battling a barrage of emotions and thoughts and preparing for yet another busy week, the Lord led me to Psalm 23, a psalm that I’ve read many, many times… so many times, in fact, that I lost sight of the meaning and promise of that passage.  But today, I am refocusing on these words, remembering the God who is always, always with me, and Whose plans are far greater than my own… He is my Shepherd, my leader, my guide, my comforter, my quiet place in the midst of the chaos.

The Lord is my Shepherd, I shall not be in want.
He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul.
He guides 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 love will follow me all the days of my life, and I will dwell in the house of the Lord forever.
-Psalm 23

We have a “normal” life.  (Well, normal is all relative- it’s as normal as any family with three children).  I get caught up in the day-to-day mommy routines.  We learn, we play, we clean, we do it all again the next day.  Sometimes it’s a bit mundane.  Sometimes it’s exhausting.  And sometimes God rocks my world with a reminder of how blessed I am to have “normal.”

Today was one such reminder.  It was a busy day with lots of running around, and as I waited for an appointment I read about a family who lost their newborn twins- and my heart ached for them as I realized what could have been… But then my normal life rolled on.  Later, I watched a mom entertain her non-verbal, developmentally delayed child during gymnastics and saw a glimpse of what might have been… But, again, my normal life rolled on.

I rushed through the evening, and paused to pick up my own two year old.  I held her as she chattered nonstop, pointing out shapes and colors… And I began to weep.  I remembered holding her close like that in a NICU room just days before her release, listening to a doctor tell me that we had a long road ahead, that we should expect developmental delays, and that she was concerned her vision may be impaired.  We didn’t know what to expect, what the future would hold for our daughter.

But God gave us a miracle… A miracle that I get to wake up to each and every morning.  She walks, she talks, she plays, she laughs… She experiences life in big ways and absorbs everything.  She loves to sing and dance and make people smile.  She beat the odds and has overcome obstacle after obstacle.  And while I am ever so thankful, there is guilt.  Why did we get this miracle?  Why did our girl survive when others around her did not?  Why does she thrive when so many others struggle?  How do we relate to those who didn’t see the miracles we’ve seen?  And how can we ever show enough gratitude??  Because no matter how much thanks we give, it could never, never be enough.  We did nothing to deserve this gift of life, yet He gave anyway…

And there it is.  The gift of grace.  That’s what He did for all of us.  None of us deserve the gift He offers, but He gives it anyway.  Grace, mercy, miracles, love… They aren’t ours to understand, but praise God, they are ours to accept and experience.  And we don’t have to do anything to earn it- just trust!  Our great big God sent His Son to pay our penalty so that we could experience forgiveness for eternity- I don’t understand it.  I don’t deserve it.  But I am ever grateful for it.

For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have everlasting life.  -John 3:16

But thanks be to God for His indescribable gift!  -2 Corinthians 9:15

I took the Dust Buster to my child.  It was the end of a looong day of mess after mess after mess, and I finally just used the handheld vacuum in my hand to clean her lap full of rice after dinner…. the same rice that had been tossed and sprinkled all over the floor (and under the table, and in her hair, and on every chair).

It had been a long day of mess, inside and out.  The two year old in my house proved that she is very good at being two… and good at bringing the two year old tantrums out of her mother.  Because with each mess, the messiness of my heart spilled out.  When she painted herself with black mascara, I snatched and yelled.  When she cleared the end table with one fell swoop (and broke something in the process), I stomped.  When she used the ranch dressing for lotion, I threw my hands up and yelled again.  When I walked in to find goldfish crackers crumbled all over my rug, I made faces and fought back tears of frustration.  When she walked by me with the dog brush in her mouth, I snatched again, and when she decided to boycott nap and sit on my back as I attempted to exercise, I growled.

But, the problem wasn’t my two year old.  She was indeed mischievous and busy and sneaky… and two.  She was testing boundaries, exploring the world around her, and enjoying life in ways I couldn’t understand.  She was doing what she was supposed to (in theory).  The ultimate problem was my own messy heart.  Instead of embracing opportunities to show love and grace and forgiveness and PATIENCE, I growled and got annoyed and was very ungraceful (and impatient).  Instead of teaching and modeling appropriate behavior, I showed my daughter exactly how not to respond to another person.  And instead of praying and letting the Holy Spirit lead and guide my actions, I let exasperation take the wheel and wreck the day.  In my haste, I lost sight of my duty to follow His plan in teaching my children, and instead focused on the disruptions to my own plans.

But, despite my shortcomings and mistakes and wretched mommy moments, this silly little girl and her silly big sisters still love me and giggle and smile.  Even though I was a hot mess today and really didn’t do much right, they still hugged me and talked to me and loved on me.  They still wanted to be around me!  These kids in my house show me the grace of our Father, who lavishes love on us in spite of ourselves, who forgives without question, who welcomes us with open arms at the end of the day.  He uses these girls and all of their wildness to show me that life isn’t about me or my plans, that love sees beyond our faults, and that there are beautiful, undeserved gifts in every day… even those days that require a Dust Buster.

We survived!  Another MRI under sedation is behind us, praise the Lord!  Harper was a trooper as always today.  She handled no food or drink all morning, and took her sedation medications without a fight- but she didn’t fall asleep as easily as expected and had to be given an injection as well.

The news was all good… Fluid and cysts are still there, and one ventricle is still enlarged much more than the other. but it all measured the same as last year, so we get to continue avoiding a shunt surgery- yay!  Her skull hasn’t fused together quite yet from her craniotomy, but her midline is nice and straight now so that you can actually see two defined hemispheres of the brain. And the best news from the neurosurgeon is that we don’t have to see him until next year, and at that point they will try a “fast” MRI, which won’t require sedation!

We have one more appointment later this week with the neurologist to evaluate seizure activity and go over medications… And hopefully that will do us for a while!  

Thanks to our prayer warriors out there… 2 1/2 years later and God is still answering those prayers.  And thanks to all of our can-tab collecting friends… We dropped off 15-20 pounds of tabs and a couple of bags of supplies to the Ronald McDonald House of Durham today!  You guys rock (keep it up!)!

When you’re a parent of a child with special medical concerns, you often coast on auto-pilot.  You do what needs to be done and just keep pushing ahead and it becomes routine and a new “normal” is established… Most of the time.

But every so often you crash.  Anxiety sneaks in and you suddenly realize it’s hard to breathe or eat or think, and you can’t stop the barrage of emotions that engulf your heart.  That was me this morning in preparing for our Duke trip.  Full-on anxiety attack with a nice mix of bull-headed-ness as I decided I just don’t want to do this today.

But, dear friends, when we find ourselves in those pits of pure yuck, God doesn’t abandon us.  As I faltered my way through the morning, He stopped me, and led me to the 13th chapter of Hebrews.  Now, there’s a lot of meat in that chapter, but there were a few verses that just spoke directly to my troubled heart today.

First, verse 6: So we can confidently say, “The Lord is my helper; I will not fear; what can man do to me?”  Confidence.  No fear.  

Verse 8… Jesus Christ is the same yesterday, today, and forever.  Knowing this, why in the world am I anxious?  He is constant.  And regardless of what we face, nothing changes who He is.

And then, verse 15… Through Him then let us continually offer up a sacrifice of praise to God, that is, the fruit of lips that acknowledge His name.  Praise is continual, without stop, regardless of circumstances… And it’s sometimes a sacrifice.  It’s not always the easiest thing to do, and we have to make that choice to give Him praise, because of who He is.

As we settle in this evening and rest up for tomorrow’s events, I will rest in the confidence I have knowing He is my Helper.  I will remember that no matter what, He is.  And I will choose to offer Him my praise for all  that He is and all that He has already done.  “Whatever may pass and whatever lies before me, let me be singing when the evening comes…”

http://youtu.be/XtwIT8JjddM

Well, we are here again.  It’s National Hydrocephalus Awareness month, and we are also just a couple of days shy of our little one’s next MRI and consult with her neurosurgeon and neurologist.  The reminders of our journey are upon us once again.  

And to top it off, Facebook decided to remind me of our first peek at our sweet girl, three years ago this week.  I look back at that day now and I’m struck by the irony of it all.  I was so impatient to find out if that baby was another girl or if we would have a boy in our house.  The whole family was there, anxious to see… And she was another girl.  And I realized that all that really mattered was that she was healthy.

I had much to learn.  At that moment, she was healthy.  She was perfect.  And a month later when we had our second ultrasound, she was still healthy and perfect.  There was no indication of any problem.  But something went wrong in the months to follow, and in the week before her birth we learned that she wasn’t healthy.  And in that moment, I realized that maybe that’s not all that matters.  Because her imperfections didn’t make me love her any less.  Her compromised health didn’t change the way I felt about this precious life.

By all means, of course I would love for my daughter to not have to face the struggles she has.  But I spent so much time saying that all that mattered was that she was healthy, when in fact that wasn’t all that mattered.  I gave birth to a fighter.  I have been in awe of her strength from the moment I met her.  Life hasn’t been easy for my warrior, and she has the battle scars to prove it.  But she doesn’t give up.  She pushes on and does so with grace and joy.

Her life has changed mine, and changed it for the better.  I’ve realized how little I know and how important the little things are.  I’ve learned to accept the unknown, to trust the Maker, and to embrace the journey.  I’ve discovered life isn’t about me or my plans.  

While I never want to see my daughter hurt or struggle, I don’t regret the road we’re on.  God has used it for good.  Connections have been made, friendships have grown, faith has been refined, prayers have been answered, hearts have healed. I’ve seen hope in the seemingly hopeless.

I still have dark days- uncertainty lurks around every corner, and the journey isn’t an easy one.  Fear creeps in, especially during these times of scans and tests and doctors.  My daughter walks around with cysts on her brain, fluid where it shouldn’t be, and areas of brain damage.  She has a list of crazy diagnoses that include porencephaly, hydrocephalus, and life-threatening seizures… That’s a heavy load.

But God isn’t finished with us yet.  He’s still writing Harper’s story, and using it for His glory.  So when my heart gets anxious over these upcoming tests, I remember that no matter what, my love for my daughter won’t change.  But more importantly, His love for my daughter, and for me, won’t change, and ultimately that’s all that matters.