Help…

How simple this word is….but how difficult sometimes it is to ask.

For years I felt like this was the only word I knew.

Every slogan…every post…every email….I was constantly asking for your help. Help us meet one more funding campaign, one more prayer request….one more step forward so we could fight back the darkness this sickness brought.

The years…..years…..I have pleaded this to Father….

Please Father….please help them…..please heal my babies….please stop this…stop their suffering.

And in so many ways…He has answered… He is a good Father, always. We have watched Him preform countless miracles. If I wrote them all down…which I have tried to write many, I would do nothing but write posts all day about His faithfulness.

But I have a confession…

I have been dragging my feet…stepping forward with a heart that is open but callused.

This journey has been hard. The kind of edification that we read about in the Bible when the vinedresser prunes his branches…it is painful.

The cutting and burning of unfruitful pieces ….so that He could grow you further than you ever thought possible.

I never realized was how much pain was in the pruning.

When you watch the amount of suffering we have lived through…

My innocent babies that can’t run from the tormenting in their own minds…the suffering in their little bodies…

This isn’t a village across the world that you hope to visit one day to bring resources….

This is your home. The place you come every day to find rest…

Watching the hope in their eyes daily….

all the while trying to hide the defeat in yours.

It scars…It tries to harden you.

And sometimes you want to let it.

So you push it down….

You try to accept the days…the path ahead…you start finding normalcy in the pain.

When Father called me home a few years ago I was so confused.

Never about my call to be a mother or a stay at home mother…that was always crystal clear.

But when He told me it was time to come home…

to pause…

to process and to heal what our family had just lived through. What my own body had just been through for years of pushing and denying my human needs to carry the needs of my children….

Deep down…..it felt like a waving of a white flag…the battle was too much…defeat was near and it was real.

During the heat of it all… I never gave myself time to process any of the grief or pain of having two terminally ill children born within 3 years of each other.

I remember walking the halls of the PICU unit, 48 hours after they cut Vivian from my body…we had just lived through her crashing. Another precious child of ours….and the devastating diagnosed hanging on everyone’s lips.

I had denied pain medicine after the c-section as I knew she needed me to be at full mental capacity to be able to help communicate her disease. It was the first time I had ever had to have a c-section. It was some of the most excruciating pain…but pain was so familiar in that season.

I got Eric to buy me a tight corset to bind my abdomen so that I could stand up straight while speaking with doctors and rounding specialist.

I took day shift and he came and met me and he took night shift….

for almost 4 weeks we never left her side.

I remember my blood counts were so low my poor OB doctor sent his personal nurse from Spartanburg to Greenville just to drop off iron pills as he was extremely worried about the levels. I hadn’t given him much choice when we had Vivian transferred to GHS. Although barely 24 hours after birth, if she was going…we were going with her.

We had to….

I remember seeing my white reflection in the mirrors….

but it could wait….

I could wait.

Save my baby….

I am fine.

But rest never came…I found myself pushing harder…if they were suffering…I could suffer too. No sleep, no rest…just run…and when I got tired….I pushed harder. Event after event…research project after research project…therapies….biochemistry classes…speeches…doctor appointments…seizures…again….and again…and again.

But God.

He knew….

You see…

as much as I love my children….

I am His child.

He never meant for disease to be apart of our perfect design…but all that changed in the garden. Sin, disease, pain, suffering….all of this…although part of His sovereignty…was not his perfect plan for His creation.

Over the past months….I have had time to process.

Time to heal…time to search out the places tucked away.

Time to process the hurt.

I have spent my days loving and holding all my babies. Growing our babies in the Lord, leading them in their schooling, coaching their teams…making their lunches, waking them up in the morning and putting them to bed at night.

And it has been so good.

Spending time with Father and

letting Him remind me of His love for me.

But over the last year He has been asking me to step forward. Step forward into a phase that He has sustained until the right time.

I have been walking a lot slower this time.

Trying to make sure I am fully understanding His path…

understanding my place….

and understanding the cost.

Today I sat on a research presentation for a manufacturing company that we had been meeting with. There was a rare disease family on the presentation and as I listened to this precious mother give their testimony and her voice crack fighting back the tears through every word….

I crumbled….

I sat and sobbed in my hands….

I could not understand why I had been so hesitant to step into this next phase…. I have prayed about it…felt God’s confirmation….watched Him part many waters…and trust me I did the sheep skin on the dewy grass prayer probably 50 times with the same answers.

But this time…

I know the costs…

this time I know the spiritual and mental battle I am walking into.

I even tried beating myself up with repeating over and over again…

”delayed obedience is disobedience”. But still every step felt like I was dragging my feet forward….trudging up ground to even take the step.

What was wrong with me….why was I acting this way? Why couldn’t I just do what He was telling me to do?

And during that research presentation…. it hit me….

I didn’t want to be angry at God again.

After I came home…I started to force myself to accept that this may be His plan for my family…this may be our best, our new normal….and I had to find joy in it.

My bigs are thriving and growing so fast…and yet we carry never knowing if this day is the last day we have with Drake and Viv….

Over the past months…..I had to find peace in His decision.

And I have…

I have accepted our hard days…our long nights…and our new normal….and it is good.

It has joy with pain, laughter with tears, and memories that encourage and not shatter now….

But what He is asking me to do is hope again…..

Hope for something I had laid down….hope that this might finally be the answer we have prayed for…the healing we have started to lose sight of.

And while that is such a blessing to think about….so comes the fear of rejection again.

The waging of war that happens when we are praying and hoping for it and His timing is different…

The waves of defeat that come and you have to fight back to protect the hope that is burning from being snuffed out again.

And if I am honest…the anger that comes with wanting something so badly….and then sometimes hearing,

"no"

at any given time.

All the while knowing in your mind that it is for your good…

knowing it is for His glory…

and knowing it is ultimately His perfect timing.

I rarely cry….I normally deal with emotions by getting angry first. It is a defense mechanism I know…but I hate when I get upset…I hate that I can't controll my emotions and they get ahead of me…I hate that I have to admit I am human and I can't be a machine….

So it hit me today…and I sobbed.

I was scared to hope again….and just like Father does…

He asked me to take His hand and step out of the boat…

…once more.

It is time…

So here we go…

One more time.

Pray for our next few days…a lot of decisions are being made. Pray for our children in the days ahead. Pray for the story God is writing…and the obedience He is commanding.

"Delayed obedience is disobedience".

Help me to be found obedient Father.

For your glory.

Amen.