SSCD – Blazing a New Trail

For better or worse, one year can change everything. It most certainly did for our family.

One year ago, Derek was barely functioning. His body was wearing down to the point where hope had almost run out and left our whole family devastated as to what our future looked like.

Multiple doctors advised against two risky brain surgeries for Derek, to repair holes deep within his skull from a rare disease called S.S.C.D. This led us to one of the hardest decisions of our life. Yet Derek courageously made the decision, against all odds, to trust in something greater than himself.

After five years of great suffering and isolation, God granted him his miracle.

One year later, a remarkable recovery is taking place. He no longer hears any internal sounds. His headaches and anxiety from his condition are controlled naturally, and he is sleeping through the night. All amazing miracles.
Though he is almost deaf in his left ear, and has lost balance on his left side due to a destructive surgery five years ago, the surgeons in California were able to save his right side.

He is NOT deaf on the right side—or walking with a walker or cane for the rest of his life like we were told by other top reputable surgeons.

So, to all those who said it was impossible, I’m proud to say, you were very wrong.

With God, ALL things are POSSIBLE.

Watch Derek dance with his granddaughter. This is what a miracle looks like when it’s dancing.

feb3

A few weeks ago, Derek went back to visit with Dr.  Michelle Massa M.D. and Dr. Li M.D. of Neurotology in Florida.

Dr. Michelle Massa never left our side. A great woman of faith she believed in a miracle when no one else did.

Dr. John Li is the doctor who was miraculously placed before us in church when we went to specifically pray for Derek.

Miracles do happen, and I’m documenting the journey. No one can deny what has happened. No one can explain it either. That’s what miracles are. Unexplainable events with divinely extraordinary outcomes.

feb7At Dr. Michelle’s practice, Advanced Natural & Functional Medicine located in Jupiter Florida, Derek received IV vitamin therapy to boost his immune system after all he has been through. How amazing to have a medical doctor who is proactive in PREVENTION. She is a true pioneer in our country. Blazing a new trail, her patients are blessed by her obedience.

And I have had a front row seat to witness her humble journey of helping others holistically.

Dr. Michelle—and your wonderful husband, Brett, who works alongside you with a compassionate heart towards all patients—we are so grateful to have walked this journey side by side with you. After witnessing this unfolding miracle with you, we believe we have been brought together for a greater purpose.

To serve others abundantly with HOPE.

beachlife7Dr. Quinton Gopen, M.D. in Otolaryngology at UCLA, the very doctor who looked us in the eyes last March and told us,

“Greater the risk, Greater the reward,”

was beaming about how well Derek looked considering all he has been through. Dr. Gopen and Dr. Isaac Yang M.D. Neurosurgeon, took a great chance at being part of this miracle. When no one else would, you took the risk with Derek at giving him a chance at quality of life again.

Exactly what you had hoped for is happening.

Quality of life is being restored.

Life is slowly returning to Derek. You cannot even see his scars. Derek isn’t in bed everyday anymore. His awakening continues. His eyes have light again. His strength is returning. And, though he’s not 100% yet, he has made great strides.

However, progress doesn’t come without great sacrifice.

The reality is that not all of Derek’s symptoms have left. External sounds are still hard on him and he still has pressure in his head, along with other symptoms. It’s vital that we find alternatives to help him cope with what could be long-term symptoms. Don’t get me wrong, we will always continue to pray for a 100% recovery. But when you are dealing with a long-term illness and damage like this, the stress can take a horrible toll mentally too. And it also impacts the loved ones who have to witness the suffering.

It’s the same for many other diseases, traumas, and hardships. I have met so many families over the years dealing with similar consequences that come with traumatic brain injuries, post-concussion syndrome, chronic illnesses, the list goes on.

This is something that I now have become incredibly passionate about. I want to help others have the tools, community, and support to thrive during long-term hard situations, but also those just coping with the stress of every day life. Because in this day and age, social media has created a culture to be virtually perfect, when the reality is—that’s the furthest from the truth.

We all struggle. And it’s during the struggles that  many people turn to alcohol, substance abuse, or physical and emotional abuse. Anxiety and depression can set in subtly, but over a course of time can lead to many health issues, and even suicide. If you don’t believe me, the statistics are staggeringly high of our own children in the USA who are on anxiety and depression meds. PTSD exists. My family is living it after a five-year crisis situation.

My eyes are now wide open. I’m embarrassed no more and realize that so many families are dealing with these same issues. Living in silence as we all once did is not healthy.

Enough is enough.

We need to support these families and that’s exactly what I intend to do. Medication isn’t always the answer. In fact, over a period of time, that option can lead to other problems.

UntitledThis was very difficult for me to admit because I so badly wanted to be the strong person and just make everything better. But the reality is that over the last five years, I lost part of who I was. I became so overwhelmed behind closed doors, that my own health began to decline. I was chronically exhausted, had continual headaches, was anxious all the time, and was sharp with my loved ones. I took my frustrations out on them. I felt like a hamster in a wheel.

I got the point of where I started to shut down, and negative thoughts, self doubt, and darkness started to cloud in on me. I didn’t even realize it.

I have learned to put on my oxygen mask first and take care of me again. At first, I felt selfish but I soon realized the important of me being at my best so I can be strong for my husband and children. Taking a holistic approach, I am feeling the best I have felt in years. My mind is clearer, I’m rested and resilient, and I can calmly be there for my family. Plus, I have a wonderful support system that has taught me to love myself again.

DSC_7158Qoute

It’s time to take the valuable lessons we have learned, and pay it forward.

We learned the purpose of calloused knees.

To pray.

And to never let go of faith.

To not quit, to finish what we started.

Five years ago, we set out to find answers and solutions. But in the process of never giving up, I realized sometimes you have to be willing to let go. If we had stayed in our comfort zone, never stepped out of the box, and did what everyone told us, we would never have become pioneers.

There will be those who tell you it can’t be done, or that you are foolish to give up what you worked so hard for, or that you need to just accept what is. In reality, they are not living in your shoes. To not have hope, to not have a vision for a better future, a supportive community, tools in your tool belt to aid you, or to not live life to the fullest wasn’t an option in our book.

In our letting go process, we put everything up for sale. Some things sold and other things didn’t. Just when we were about to let go of everything, God said, “Enough!” After five years, the medical bills and loss of income nearly sucked our accounts dry, and that’s when the Lord sent provision and angels all around us. We became creative and fought back. Living out of a 5th wheel camper full time, we drove across country for Derek to undergo the two brain surgeries to give him more quality of life again. Not a day goes by that I’m not grateful for Derek’s miracle and for all the relentless prayer warriors.

On our new trail, hope was restored and miracle upon miracle graced up on us. We learned to not care about what others think. Instead we learned to just care.

Now, it’s time for us to rebuild our lives. The season of cleaning up after a five-year tsunami is upon us.

sarahtrailerWe drove back to Wisconsin. The era of sleeping in truck stops and rest areas is coming to an end—for now.

(I have learned to never say never.)

Though our home sold, by the grace of God our farm was saved. Though we have no home, our camper is parked on the farm and lots of decisions are in front of us. Many of those decisions depend on Derek’s continued recovery. Patience. Oh, how that word is now tattooed on my soul.

We are catching up on all the change that took place. The world didn’t wait the last five years while we searched for a cure for Derek. It kept going while our family lived isolated in a time capsule. Babies were born, loved ones went to heaven. So much of it we haven’t even had a chance to process. At times, the aftermath of seeing what we have missed out on wants to haunt us and rob the joy of this unfolding miracle.

That’s when we live one day at a time. Don’t think too far ahead. Instead of looking back, we have learned to focus on the present.

I want to encourage you to take ownership to all those voices in your head that tell you, “It can’t be done” or “It’s impossible” or “That’s a foolish decision.”

 I struggle all the time with those same voices in my head. Believe me, it’s extremely painful and makes me anxious to be as vulnerable as I have been when I write. Deep down, I’m like everyone else, I worry about what others think.

I only openly write this out of obedience. Years ago, in the middle of the night, a voice whispered to me “Write,” and I obeyed even when it didn’t make sense.

febblogBecause  I was inspired to write a blog, years later, a Kohl’s cashier read it, and was courageous and obedient enough to send this message and link to me. That link eventually led us to the surgeons in UCLA.

We could have listened to top surgeons who told us it was impossible, or a Kohl’s cashier.

We chose the Kohl’s Cashier.

You have the same choice. To listen to the world around you, or to be obedient and act on blind faith—to blaze a new trail.

Maybe it’s time for you to be obedient. Even if it’s crazy and doesn’t make sense.

Take a leap of faith. There’s a trail—and a miracle—waiting right around the corner for you.

                                          Sarah Hein the Pioneer

 

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