30 Days of Prayer: Pray to Embrace Walking with God Uniquely (Day 15) - Be Whole, Mom

It has taken me a long time to embrace walking with God.  Five years ago we entered into the most difficult season of testing we’ve ever gone through, and we’ve been through quite a few.

But, in the midst of it all hums the question from above: do you love Me most?  Will you remain Mine no matter what hardship you must endure?  No matter what you must sacrifice of yourself or let go?

That is the question, isn’t it?

Welcome back to the 30 Days of Prayer series!  I know this series has been trying at times, but I assure you the fruit of standing firmly in these prayers is worth an eternity of blessing.

Today we’re going to discuss the walking with God, and tomorrow some of the lies that have mixed into the flock.  Walking with God is surely not always an easy journey, but it is absolutely the most rewarding one there is.

The story I am about to share has remained buried in the corners of my heart for five years, but now I get to share some of the intricacies of it and how the Lord has used it to connect with me anew.  I pray that it is provides encouragement and strengthening for you.

I distinctly remember it: You are beginning your Job season.  

Clear as day, I heard the still small voice speak the words that pierced my heart and broke me.  We were on our way to the ER for our 22-month old son who had spontaneously begun to shake and lose all muscle coordination over the course of 5 days.  My mommy eyes knew exactly when it started and no matter what others could not see.  I knew: something was wrong with my son.

When we arrived at the ER with our then 5 children, my husband went in with my son while they did labs and tests.  I stayed with the other children, including our 3 month old.  I did my very best, “Everything is going to be okay” face, but deep down I did not know.  My heart gave silent prayers for protection and strength.

Related: 35 Bible Verses to Embolden Your Faith {+ Printable}

Not long after, a woman came into the ER with her little baby.  She said the baby had a fever, but she didn’t seem too concerned about her.  It caught my attention as odd, but I brushed it off.  We got to talking a little bit, and she asked why I was there.  I gave her the short details, which were mostly what I knew anyway.

A moment later, she asked, “Do you believe God can talk to people?  Like, audibly, as in a clear voice to them?”

I stuttered, but agreed, “Yes, I do, though I don’t necessarily think everyone receives from Him that way.”

So, she said, “Great.  Well, He’s telling me that you are a real woman of faith and your son is going to be okay.  Oh, and that entrepreneurial dream with you and your husband?  That’ll work out, too.”

I was flabbergasted.  I had never before had a message so clear from someone I did not know at all.  She had no earthly reason to speak into these things, and yet she knew them clearly.

I gave praise in my heart and thanks to God to send me that message so early in our journey…for it would be a long one.  Walking with God always is.

Here is a little video of our son weeks before he got sick.

 

Our Story

We were in the hospital for five days of testing.  They worked up our son with every known test, including a spinal tap (which was the most traumatic event of my life), and found nothing conclusive.  There was no clear reason why this was happening to our son.  And, his symptoms only continued to worsen.  It did not “feel-good” at all.

What began as only body jerks and then inability to move and stand without shaking became eyes rolling around in his head and an inability to stand at all, or walk.  He began to drool, he could barely sit up without falling over.  It was terrifying.

Why is this happening to us?

We left the hospital with a diagnosis of acute-cerebellitus, but it never sat right with me.  They said he would get better in a 6-7 weeks, but it didn’t feel quite right.  So, I watched the calendar, and waited.

The symptoms only worsened.  No longer was our son able to talk and run and laugh and play and practice taking the steps with his big sister.  No, now he had to crawl and often even when crawling around his arm would not obey the directions of his brain, so he would smash his little face into the ground or a toy.  He was bruised and battered, like my soul, but still his little smile remained.  My hero.

Seven weeks later, nothing had changed except for new and worsened symptoms.

We had begun to experience intense rage attacks and night terrors.  He was often inconsolable, but we would patiently hold and rock him and try to calm him down.  It was not easy.  It was horrible.  But, this was my son.  I would not let him suffer alone.

As we approached the time that we were told he would be better, we knew we had not been diagnosed properly, so I consulted the dreaded and hated Dr. Google, and found my answer.  A simple search for misdiagnosis acute cerebellitus led me to the most clear and absolute answer: opsoclonus myoclonus syndrome, or OMS.  The next day we headed to the Children’s Hospital in DC for conclusive testing, which we received.

This is a video I took after initial testing, but before verification of OMS.

 

OMS is a condition that affects 1 in 10,000,000 people worldwide, which is about 80 cases around the world each year.  It’s like winning the lottery in reverse….  Though 50%+ of the time OMS is caused by a neuroblastoma (i.e. cancer), we never found one in our son.

The other known causes are vaccine triggering (not our cause), Lyme’s disease (potential cause), and simply an auto-immune response trigger due to any virus (most likely cause- our son had had a cold he’d been unsuccessfully fighting for a month…a simple cold).

Related: 7 Empowering Lessons I’ve Learned from my Special Needs Child

Conventional treatment methods included the scary words, like high-dose steroids (in our 2 year old), or immunoglobulin therapy, or IVig, and chemo.

But, again, I heard the still small voice whisper into my ear: I’ve been preparing you for this moment for 7 years.  Are you going to trust them, or me?

He could no longer sit up without support.  He rolled around and fell, often hurting himself and others.  Thankfully, we only landed in the ER once due to a hard hit into a brick hearth.  Thankfully the forehead is a super thick bone, and only 4 stitches were needed!  My mommy heart felt fried, and emptied.

But, the Lord had provided an answer to our need months before in the most unexpected way.  For 7 years I had been studying alternative medicine as a side interest of mine.  Walking with God continued to lead me down inquiries of questioning and a search for understanding about the way things work in our world.

I received a general undergraduate degree in health and wellness, where I studied multiple modalities of alternative health.  I fell in love with God’s provided modes of healing, which were outside of pharmaceuticals.  I began to question everything and research heavily.

And, I had been successfully treating our children’s every illness with alternative methods for over five years.

Towards the end of my fifth pregnancy, I felt a need to find a pediatrician.  This was a specialty I had avoided like the plague for four years because of frustration with the incredible disrespect I had received regarding my preference-for-non-pharmaceutical treatments.

I don’t do belittling antagonism.  And, I won’t stand by while someone oversteps and minimizes my beliefs and views as less than their own.

I remembered a name I had been given during my undergrad program, during my Complementary and Alternative medicine (CAM) course.  In that course I had to interview a local CAM provider, and I chose to interview a local Naturopath.  She was wonderful.  When she heard that we had a few children, she provided me with the name of a pediatric naturopath she worked with, but I was too terrified to go. And I had sat on the number for over a year.

What if she reported us for not seeing a doctor?  What if she did horrible things to us because we did not vaccinate?

It is sad that these questions even ran through my mind, but oh did they ever (and this was five years ago).  Thankfully, they proved to be unfounded.  When I finally got the courage to call her and set up an appointment, she was in full support of our choices, and applauded our decisions…but, that is a story for another day.

Only four months after we had connected with this pediatrician, our son became sick.  And, as a master Chess player plans his moves ahead so all the pieces are where they need to be for the final move, our Abba had pre-established a provider to help us navigate our valley.  She was fully equipped to work with us through an auto-immune disease.

Here is a video of his progress after a few months of alternative treatment.

 

The choice was clear.  Walking with God had set us on a path, and now we had a choice.  Would we choose to continue to follow Him where He was leading, or trust another path not marked out for us?  Though scary and uncertain, no less than conventional medicine’s path, we would trust where He was leading us and what He had already established.  We decided to work with alternative medicine.  And, that is exactly what we did.

Little by little he regained his coordination.  Piece by piece, his brain was healed and restrengthened.

 

Within four months he was walking again (though not perfectly), and now at 7 years old, he rides bikes, runs, plays, and is wonderfully active, though still has neuro-deficits that are slowly but surely being worked out.

“For my thoughts are not your thoughts, neither are your ways My Ways.” ~ Is. 55: 8

There is more to our story, and it is still on-going, but this single season of trust with the Lord has taught me so many things about faith.  I had some really hard lessons to learn, about control, trust, belief, perseverance, and many other things.  We experienced our fair share of judgment and criticism, even the Job-like accusations of hidden sin.

It was a very painful, and refining time in our lives.  But, one I would not trade for anything, or the lessons that it taught.

Related: See my Movie Review of Wonder: A Wonderful Family-Friendly Film

He is Leading You Where You Need to Go

I know that it can be scary sometimes.  The world is dark, and things can truly be uncertain.  But, God is bigger than the enemy and He is in control, even when everything feels out of control.  Trust Him at all times, even when it feels impossible.  He WILL direct your steps.

Abba, thank You for inviting me to walk with You in this life.  It is scary and unsure sometimes, but with each passing pain You reveal Yourself greater and greater to me.  Never stop becoming more while I become less.  

I love You more than myself, and more than the desires of my heart.  Purify me through my walk with You.  Lead me in the Way everlasting.

Sweet sister, no matter what struggles come, stand firm in Him.  He is with you, and is not going anywhere.

Shalom.