Where have the past four years gone? I catch myself every day wondering this very question. The back to back marathon that has taken us around the country to find a diagnosis and cure for Derek has left a path of destruction and exhaustion in its wake. No hope. No real diagnosis. Just a broken story with no positive ending. No one really knowing what the root of the problem was. Leaving the future for Derek very uncertain.
Our story had been written.
And then what felt like a movie reel playing before us, a series of events took place in the past three months. I was in church, praying deeply for a miracle, back in December with Derek’s relentless amazing Dr. Michelle Carrillo- Massa at my side. Right before our very eyes, was a man who changed everything. Dr. Jon Li, from Jupiter Florida.
Our lives haven’t been the same since that moment. Dr. Li opened a new door to Derek’s unraveling medical condition. That same evening Pastor Todd of Christ Fellowship church prayed over us and said,
“God is rewriting Derek and Sarah’s life.”
I didn’t understand yet, what this meant. But over the past three months, like a ball of yarn unraveling, I’m beginning to see glimpses of the masterpiece our Creator is painting before my eyes.
The Unfolding Miracle.
What we had planned for our lives, most certainly didn’t have this journey in it. Our goals, dreams, adventures, didn’t look like this picture. Together we wanted to have a “Little House on the Prairie” life. A farm. Raising our children the old fashion way. Faith and family first. Chickens roaming around our yard. A simple life. Pioneering back to the lifestyle of the days long lost. Where potluck dinners, barn dances, and helping your neighbor was a way of life. Our little farm on French Road, was a magical place. Where we took something abandoned and turned it into something beautiful.
But that’s the point. We were living the story we wanted.
Not the story God wanted.
The humbling heartache I have had to witness has changed my sight. I’m beginning to see the vision God had.
Now it is time for me to accept and receive God’s vision for my family’s life.
I want to make this very clear. I’m NOT writing to make anyone feel sorry my family. Instead, I write to honor the Author of my life. The very same Author of your life. These stories are revealing His ultimate glory. For I cannot make any of this up.
A moral obligation to document what we have witnessed has been assigned to me.
To be an example for my children, and all of you. That we are all human. Our nature is to be angry. Grieve. To have a strong desire for justice in a wrong diagnosis and all that has been lost. And just when you think you have nothing left, there is always hope.
That’s when you only have one choice. The BEST choice. To look up, reach up, and let the Creator of the universe pull you back up on your feet.
TO S T A N D U P.
Personally witnessing miracle after miracle has allowed me to begin to understand the ultimate gift of a tiny mustard seed of faith. It’s as if manna has slowly dripped from heaven for our family. Receiving what we needed when we needed it.
How do I turn a misdiagnosis, that has changed our lives so drastically into beauty?
Truth be told, I can’t. If I depend on myself, this is the ugliest story ever to me. But when we TRUST in the ONE who the world has forgotten, the greatest love story is revealed.
Here’s an example.
I asked you all to pray for a clear 100% diagnosis. Mighty Warriors, the LORD heard your prayers.
Our 4 year prayer has been answered. A clear cut, 100% certain diagnosis.
But mighty prayer warriors, I need you back on your knees. Praying again with me.
R E L E N T L E S S L Y
The doctors in California, who we have grown to LOVE, TRUST and ADORE, boldly stand as generals on a battle field in front of Derek that he was misdiagnosed all along. And received damage from surgeries he should have never had.
Derek has SSCD.
Superior Semicircular Canal Dehiscence. No question. Clear cut in his CT scan according to the two of the top surgeons in the U.S. regarding this condition.
From birth, certain bones in Derek’s skull developed very thin. Over time a hole surfaces in the bone right below the brain. A disease that is newly diagnosed, often goes undetected, and leaves deliberating symptoms in its wake. It’s a deformity. There was nothing Derek did wrong. Just the way he was made. And because of this rare flaw, even more rare he has it on both sides. Leaving holes in his skull which will require two brain surgeries to correct it.
Without this surgery the hole has created a third opening of hearing going directly to his brain. Allowing Derek to hear his eyes move, his heartbeat, his muscles in his neck move. Hearing internal sounds 24/7. He has an amplified orchestra of chaotic noise in his head. The extreme fatigue his brain and body goes through this chaos is enough to make a person literally go insane. Just to get through the day is enough to make anyone want to give up in life.
But not my Derek.
Though he has been isolated from the world, for 4 years. Even attempted multiple times to work living with these horrible symptoms he refused to give up.He fights every day to come back to me. To come back to his kids and sweet granddaughter Scarlett.
Yet the reality is, his body is worn out.
Derek isn’t just an ordinary SSCD case. He is an extraordinary case.
It is now confirmed and revealed to us, with Dr. Gopen reviewing the test results I sent back to him the rest of the story. Since Derek, was misdiagnosed, and had massive complications in the wrong surgery, it resulted in Derek losing more than 90% of his balance on his left side.
The SSCD is worse on his right side. The largest hole is on this side. Unfortunately this really complicates things. If anything goes wrong in surgery on the right side, Derek could lose almost all of his balance. This is very concerning to the doctors. Yet if we don’t cover the hole on the right side, he will never get better.
In a normal case of SSCD, brain surgery to correct it has a 90 % chance of great improvement. 10 % of no change. These are very good statistics.
If we do the RIGHT SSCD these are the potential outcomes for Derek’s situation;
1.Derek could come out the SAME – no improvement.
2.Derek could be spinning vertigo the rest of his life. Worst case scenario.
3.Derek could receive a miracle. Restoration of his life by the grace and mercy of God.
Dr. Gopen & Dr. Yang are willing to take the chance if Derek is.
Derek made the decision.
Surgery on right side. Higher risk=greater reward.
I’m not the only pioneer. I married a pioneer.
The surgeons opened a day for Derek. They were booked till July already.
Surgery is on Thursday MAY 4th.
Derek’s day of INDPENDENCE!
Unfortunately this brings me to the next complication. Coming back from California, I was ready to STAND up against the insurance companies and disability ‘title’. Having a true diagnosis, I was actually excited to shove it in their faces and get this ball rolling. But instead, the past week has have been shocking as to our options.
PLAN A: Derek has waited for three years in the disability line. I decided to attempt this option again, now having this diagnosis and call our state politicians offices on both sides of the fence over Derek’s case. What I learned dropped me to my knees.
Because Derek and I worked hard, for 16 years, chose not live beyond our means. Paid things off. Created our own businesses. And then, the past four years, worked our butts of to not go bankrupt. By God’s beautiful grace and gifts that just showed up over time, we never missed a house payment or missed any bills. All glory to God. He gave me the ability to work, and whispered on people’s hearts through anonymous gifts. On top of it, what we had saved for our future, we began to drain our life savings. We have sold our home, sold many things and will keep selling what we have left. And keep working hard.
Because its the right thing to do.
Because we worked hard. We didn’t become homeless. We cannot get Derek on disability.
I was told, “It’s too bad you didn’t’ get more behind on your bills. If you became homeless, declared bankruptcy then you could have gotten on disability sooner.
My husband is punished because I refused to go bankrupt and worked my butt off? Because Derek has never been a convicted felon, drug addict, homeless, bankrupt person, and he rose up with horrific symptoms and tried to work, he can not receive any help.
I actually had someone tell me I should have either filed our taxes separately or divorced my husband. Because I stayed married to Derek, didn’t divorce him, and instead filed jointly, the odds of him getting any help are slim.
Breathe. Sarah. Breathe.
I couldn’t believe what I was hearing. EVERY politician’s office told me that this is just the way it is. And since no one is getting along in Washington DC nothing is going to change fast. I’m not putting down the homeless, and less fortunate at all. This is a girl who once lived out of a car herself. I know what it is like to have nothing. But I chose to become a pioneer, vowed never to be homeless again.
It’s why I WORK HARD and take pride in my work.
But the system we have in place encourages a culture were there is NO incentive to work hard. Instead we reward bad behavior with no consequences. However, there are harsh consequences if you roll up your sleeves,WORK, and do the honorable thing.
Well, here’s my answer to this.
I answer to a higher authority. Not man. But GOD. I refuse to follow the culture that has been created. I will continue to work hard and honor my GOD. I refuse to become homeless and develop a feel sorry for myself mentality. That’s the problem. Every one feels they are ENTITLED!
Plan A just went down the toilet.
Plan B: Our Health Insurance
We have in insurance through Obamacare. You have insurance. But people, get out your plans. Read the “out of network” part. It’s a nightmare. The insurance companies dictate who you can and can’t see. Making it nearly impossible to go to who you need to. Red tape. Prior authorizations, they do everything and anything to wiggle their way out of paying. All at the mercy of taking advantage of a SICK PERSON. These are expensive surgeries. The insurance companies are fighting me every step of the way.
Our plans offered to us in Obamacare NEVER even gave us an option FOR OUT OF NETWORK care. For Derek’s rare preexisting illness, Obamacare has cost us more than it is has saved us. We are stuck staying in network. Or pay 100% out of network.
No way. Over my dead body,
will the doctors who missed this all along, be doing these surgeries.
It’s time…. to REALLY become Pioneers.
Do. Whatever. It. Takes.
Move to California. Establish residency. Get on Obamacare in California. And I have the first two weeks in April to get this all done. If I can’t get insurance to start May 1st, Derek’s surgery will get placed further out. Pray BOLDLY insurance goes through.
This is the only option. We are moving to Los Angeles. The last place this country girl and boy would ever want to move. Leaving our support network of family and friends is a deflating feeling. But these doctors are exactly who God has led us too. They are Derek’s chance to fight for his quality of life back.
Sometimes in life, you have to do exactly what you don’t want to do, to get where you want to go.
I’m not wasting any more time. Surgery date is May 4th. Since the cost of living is so high in California, I’m working on purchasing a camper that we will call our new home.
Our 5th Wheel Camper will be turned into a “covered wagon”, and we will load up the family and head out west. Pray I find a place to park our new home. We are entering their busiest times of year and the campgrounds are getting sold out.
Derek deserves to have a chance at getting his life back. He has waited 4 years 4 months 24 days for his miracle.
Derek, Gavin, Snickerdoodle and I leave in a few weeks for our adventure across the country. Though we leave our daughters behind, we will do what ever it takes to fly them out to us for their Dads surgery and recovery. Pray for the strength of our children.
Mark your calendars. May 4th.
We trust you heavenly Father that you have led us this far, and you will see this through.
For once and for all.
I have great vision. For an ultimate healing. A Miraculous miracle. No more suffering. No more balance disorder. A quiet beautiful peaceful world to be replaced for Derek.
The very kind of miracle I have written and fervently prayed for over four years.
Believe with me.
Sarah Hein the Pioneer