SSCD – Christmas Pajamas

 Stress, anxiety, and feeling overwhelmed are not words most really want to admit are associated at Christmas time. And yet the reality is, it’s one of the most stressful times of the year. When I think my life is stressful, I often think of Mary, the mother of Jesus. Can you imagine being a young 13 or 14-year old girl, pregnant—out of wedlock?

The pressure. The guilt. What are people going to say? Then, to make matters worse, an angel visits her. Great. Now Mary is seeing things.

Boy are the neighbors going to talk.

But Mary takes a leap of blind faith. She believes in what she cannot understand. And through her Son, the world was changed forever. For the rest of her life, Mary treasured up all these things and pondered them in her heart.

Mary is an ultimate pioneer woman in my book.

Not that our situation is as stressful as Mary’s—who was chosen to carry the Savior of the world. Still, as I reflect on Derek’s journey while I’m sifting through pictures, I am humbled and emotional as I take a walk down memory lane and ponder these things in my heart. Because I’m so in awe of how this all came together, I know without a doubt that this story needs to be shared.

 And what a story it has become.

Here is Derek’s Christmas story.

Dec. 14, 2012

Five years ago, right before Christmas, Derek woke up from a minor surgery, a major mess. The symptoms were completely disabling. These 24/7 horrific symptoms have been with him ever since.

A tiny little implant changed our lives forever.

Weeks turned to months, months turned to years. Traveling to multiple states to see a multitude of doctors and surgeons. Every single time we came up empty-handed. Everything we had worked so hard for was slipping through our fingers. Calloused from my prayers on my knees, I didn’t know where to turn anymore. I was completely desperate, watching my entire family go through crisis situations. That’s when God refined me.

I learned to be silent. Be still. Listen to the whispers in the night.

sarahwriting

 

Sept. 14, 2014

In the middle of the night, I heard a voice say, “Sarah, write.” And so  I did.

 

Nov. 2016

That same voice said, “Sarah, sell your possessions. Trust in me, not things! “

We put our home and farm up for sale and sold many of our things.

nienwoThe moment we got the offer on our home, we were on our way to visit friends. When they asked us what was new, we told them we accepted an offer. “Where are you going to live?” they asked.

We didn’t have a clue.

“Live with us,” they said. And so we did.

God DOES send earthly angels, exactly when you need them!

Dec. 7, 2016

screen-shot-2016-11-28-at-11-10-23-amThe morning we sold our home was surreal. Everything we had left was packed in boxes and put into storage. On top of everything, it seemed like a cruel twist of fate that it was Christmas time. Our favorite time of year. We had no tree. Feeling like our family traditions had been ripped from us, I was bound and determined to do one thing for my children.

 Purchase Christmas pajamas.

Every Christmas Eve, I give my children Christmas pajamas.

And I was determined to continue that one tradition.

laurieAt Kohl’s department store, as I stood in the checkout line, holding onto my children’s Christmas pajamas, I was fighting back tears of anger and fear, when the cashier named Laurie spoke.

“How’s Derek?” she asked.

That was a loaded question on this very day.

“I have been reading your blog and have meant to call you. I think I know what’s wrong with Derek. I saw this episode on the Dr. Oz show. I’m going to send you the link. I’m telling you, it’s some weird ear thing that sounds like what Derek’s got going on. It’s been on my mind ever since I watched the show.”

Rolling our eyes as we walked out, we knew there was no way a Kohl’s cashier could diagnose Derek.

Dec. 8, 2016

dr-m-and-dadThe next morning, we were scheduled to fly to Jupiter, Florida, to see Dr. Michelle Massa.  She had relentlessly stayed by Derek’s side for years and wanted to continue to pursue an answer for Derek.

As I was preparing for the trip, the Kohl’s cashier sent me the link from Dr. Oz. She actually followed through!

Reluctantly, I watched it.

The story brought me to my knees.

The symptoms on the Dr. Oz link matched Derek’s symptoms to a “T.” Somewhere inside me, I had heard of this condition, but couldn’t remember where.

Immediately, I sent the link to Dr. Massa.

The next several days in Florida, I slept restlessly. All night long, whispers of this condition woke me up. Something was telling me to keep searching through Derek’s medical records. Dr. Massa also researched this rare disease. Wanting another opinion for Derek, she pursued Dr. John Li, a neurotologist, for a doctor-to-doctor consult. Though she had never met him, she had referred many patients to him and heard only amazing reviews.

But it was Christmastime and impossible to get Derek in.

Dec. 14, 2016

Sitting in our hotel room, it was Derek’s four-year anniversary of this nightmare.

I had been combing through his online medical records, from multiple hospitals and clinics, for days—finding nothing.

diagnosisUntil I miraculously discovered a cover sheet to the CT scan from 2015.

The diagnosis was the exact same condition on the Dr. Oz link.

I dropped to my knees in disbelief. A swirl of emotions consumed me. Derek was diagnosed with this rare disease—and the entire medical staff disregarded it!

Dec. 17, 2016

We hadn’t heard anything from Dr. Li’s office for several days as he was completely booked and we were scheduled to fly back home to Wisconsin the next day. Devastation hit me.

What if this was another dead-end?

Derek had another horrific migraine that was sound-induced. Packing his head in ice, my heart was ripped into pieces and  I didn’t think I could go through one more wild goose chase.

Dr. Massa said, “Let’s go to church and pray.” And so we did.

She insisted we sit in the front, but the church was packed.

“The front is where all the action takes place!” She said.

Like the Red Sea parting, some kind people moved over to make enough room for us. We were in the fourth row from the front of a very large church.

My focus was Derek. Completely broken, I literally begged God for a sign.

 “Please God, show me something—anything. Give me a sign what to do.” I prayed.

That’s when Dr. Massa said, “You will not believe this.”

Looking at her face, she clearly was in shock.

I looked where she was pointing and saw a man. Not just any man.

Dr. Li was two rows in front of us.

The very doctor she was trying to get for Derek.

Li

Sometimes God just plops a sign so big, you can’t miss it.

This was that moment of plopping.

After the church service, the two doctors discussed Derek’s case.

The pastor of Christ Fellowship, Pastor Todd, and his wife, Julie, joined us and prayed over Derek’s situation.

Pastor Todd prayed,

“Lord, You are rewriting the story of Derek and Sarah’s life. Their story is being rewritten and a miracle is about to unfold.”

Dr. Li looked me in the eye and said, “If this is what your husband has it can be fixed. It is a horrible condition. I just had a patient the other day who has this and was on the verge of committing suicide he was so miserable.”

He agreed to see Derek.

Dec. 28th, 2017

The two Doctors reviewed Derek’s case. Dr. Li noticed a small hole and thinning on his superior canal bones in his skull on his CT scan.

Dr. Li disagreed with the Midwest doctors and surgeons. He thought Derek had this rare disease:

SSCD. Superior semicircular canal dehiscence.

Unfortunately Derek also had significant damage from previous surgeries. Because of all the damage, there was no doubt Derek was facing risky surgeries.

We needed more opinions.

Dr. Li was also 100% out of our insurance network.

Feb. 22, 2017

We had a six-week wait to meet with his surgeon from Wisconsin again. Oh, how I have grown to love our health care system—NOT.

All that wait, only to find out he disagreed with Dr. Li’s diagnosis.

Looking us in the eyes, he said, “I do not think he has this condition. But if you want I could do the brain surgeries to correct it, however Derek would most likely never walk normally again. He could lose all the hearing he has left and all his remaining balance system. Derek has had too much damage done and would more than likely walk with a walker or cane, or be confined to a wheelchair, because he would be spinning with vertigo the rest of his life.”

We left his office devastated.

And, yet, my mind went back to Christmas pajamas…

A link from the Kohl’s cashier, Dr. OZ, and Dr. Li in church.

There were two doctors were on the link. Dr. Yang and Dr. Gopen from UCLA.

That’s when it hit me.

We needed to get Derek to those doctors.

Dr. Massa called Dr. Yang’s office. Miraculously an appointment open up just a few weeks out. Unbelievable. These doctors are completely booked out.

I took the appointment knowing full well these doctors were also 100% out of our network. Booked flights, a rental car, and hotel.

Our pocket-book was dwindling. I didn’t care anymore. I was on blind faith.

March 22, 2017

We flew out to UCLA and met with Dr. Yang.

Within a matter of minutes, he presented an official diagnosis: SSCD.

Without hesitation, he called Dr. Gopen, his dear friend who, over the phone in front of us, and discussed Derek’s case.

Stunned and shocked, it was confirmed. Derek had this rare condition on both sides, which would require two brain surgeries. Though it was risky due to all of Derek’s damage, it was what these two doctors said to us that changed everything.

“Derek, we have perfected this surgery the past four years, just for you, and I give all the credit to Jesus,” Dr. Yang said very enthusiastically.

Dr. Gopen asked, “Derek can you continue to live like this?”

He continued, “If it were me: Greater the risk, Greater the reward.”

Derek agreed to two brain surgeries by these two incredible men who are known around the world for having made amazing advancements on this complicated surgery.

When Dr. Yang found out we had no insurance, he refused to let us pay for our appointment.

Miracles really do happen.

Flying home is when it really hit us.

We had no insurance for two brain surgeries. A move across country. No place to live. We were barely making ends meet. How on earth were we going to pay for this?

Completely overwhelmed, we had six weeks to figure out what to do before Derek’s first surgery.

I kept my mind on Christmas pajamas.

If God brought us this far, He will see us through.

camperPurchasing a 5th wheel camper while fighting insurance companies (and losing), we drove across country in our new home. I worked out of the camper in California and got Derek onto California insurance.

It was the only way.

Sometimes in life, you have to do what you have to do.

Financial support began to pour in from all of you through a Go Fund Me account that our children and amazing prayer warriors set up. God sent us provisions. A slow and steady drip of manna daily poured in, humbling us.

May 4, 2017

Over 20,000 souls around the world dropped to their knees and prayed for my sweet Derek. He made it through the risky brain surgery.  No complications.

He didn’t lose his hearing. And he can walk—without a cane.

God saved his hearing and balance.

He faced a long brutal recovery in a campground that was, to say the least, incredibly shady—from drug dealers to bedbugs to homesickness.

Yet, we were covered in prayers and made it through.

Over the river and through the woods, over mountain tops, wind, rain and the blazing sun, we drove the long trailer back and forth from Wisconsin to California for the next surgery.

Sept. 2017

After a five-year fight, Derek was finally deemed disabled (but not for long). All because he finally had a diagnosis. Completely nervous about our financial future and a career for Derek is when the next miracle happened.

A new, brilliant, amazing opportunity opened up, right before our eyes.

Dr. Gopen’s words echoed into my soul, “Greater the risk, greater the reward!’

Derek and I were born to be pioneers and blaze new trails.  We want to help others on a deeper level more than ever before.

We partnered as founding distributors with an incredible new company that will reach the masses and help anyone and everyone live a more fulfilled life.

The first-ever Mental Wellness company:

Amare Global.

Some of Derek’s doctors from this journey have joined this new mission to have more tools and holistic approaches to help their patients. It was as if God was leading us on a trail this whole time to get us to this destination.

Oct. 12, 2017

Second Brain surgery. No complications.

This time over 30,000 souls prayed for Derek.

Derek no longer hears his internal sounds. A massive miracle unfolded.

God bless Dr. Yang and Dr. Gopen, Derek’s angels.

Oct. 17, 2017

beach14

 

Another long recovery awaited Derek.  Homesick, exhausted, and living in another not-so-nice campground again, we were given two offers in one day for a decent place to park our camper.

We ended up on the beach for a month at Camp Pendleton while Derek recovered from the long brutal recovery. Thank you Lt. Col. Christina and James Beck.

Though Derek is not 100% yet, he is awakening. External noise, hyperacusis, is still rough and pressure in his head continues. As we continue to pray over his next steps to miraculously heal the damage the misdiagnosis and previous surgeries caused, we know this:

laurie2If God can leverage a Kohl’s cashier and Christmas pajamas to lead us on this miraculous journey, he can use us to help others in the masses.

He takes the ordinary and makes them extraordinary.

God is enough.

All these interruptions in our life became invitations for a greater purpose in life.

It did not happen overnight. There were moments of dark grief. Pure frustration. Anger. Bitterness that wanted to consume us.

But when we learned to surrender to what we didn’t seem fair and accept the invitation, that’s when miracle upon miracle unfolded—right before out eyes.

toddOne year from the moment we witnessed the beginning of Derek’s unfolding miracle, we returned to Christ Fellowship church. And though Derek still has great sound sensitivity, with the help of some deafening headphones, he made it through the whole church service. Something he would have never been able to do one year ago.

This time, Pastor Todd prayed directly over Derek, thanking God for this unfolding miracle.

 

Our children have all flown in and are celebrating an early Christmas with us in Florida. We are proud of a new tradition we have created. Our very own real life

“Christmas Vacation—Griswold’s Story.”

But there is one tradition I kept and will always keep.

I bought them Christmas pajamas.

And found the funniest pair EVER for all my boys.

I will never buy another pair PJ’s without tears because I will always remember that Christmas miracles do happen. I do believe that God has a beautiful sense of humor and laughter heals the soul.

If you are in need of a miracle this Christmas season, go buy a pair of pajamas and remember Derek’s story.

If God can slowly unfold his miracle, HE can unfold yours. Your job is to buckle your seatbelt of faith. Surrender. Let go. Be patient. Be obedient. Work like it depends on you, and pray like it depends on God.

Please continue to keep Derek in your prayers as we continue to address the damage that has been done to him. We know God is using Derek to bring hope to the suffering, and that his fight is his purpose to the world right now.

Because all that matters really is the life to come. Eternity. Nothing else really matters.

Though we would rather not be in the position we are, we accept whatever course God has us on, because we were destined to be PIONEERS.

Merry Christmas,

Sarah Hein the Pioneer

P.S. If you know someone going through a tough time, please pass this on. May it give someone strength, peace, a sense of adventure, and—above all—HOPE.

 

 

 

 

 

 

 

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