SSCD – Rewind

Have you ever wanted to fast forward your life to the future? That was me exactly one year ago today. I wanted to wish the year ahead of me away.

One year ago, anxiousness consumed me. My husband’s future—our whole family’s future—was uncertain.

We drove cross-country, pulling a 42-foot camper to UCLA hospital in California, so Derek could begin the next phase of his journey: two brain surgeries.

Exhaustion consumed us both. Calling us weary and heavily-burdened would be an understatement.

He wasn’t the worst case they had ever seen, but he ranked as one of the worst due to all the damage created by surgeries he should have never had, and complications from those surgeries. We didn’t know if he would come out deaf, unable to ever find balance again, which would have confined him to a walker or wheelchair the rest of his life. This is not a way to live when you are 44 years old. This doesn’t even cover all the other complications that come when you lift a human brain.

The night before his surgery we met with the surgeons. They remained optimistic, yet had to go through the worst-case scenarios. I will never forget the feeling I had in the pit of my stomach.

Numb. Blanketed with fear. Too tired and exhausted to pray. I felt paralyzed.

Yet, through many tears, I watched my hero of a husband who was willing to take the greatest risk of his life.

Greater the risk, greater the reward!

Before surgery, we prayed over the surgeons and Derek. I visualized Jesus guiding the surgeons’ hands in the surgical room, equipping them with the wisdom and steadiness to do God’s work, and perform a miracle.

I learned the power of prayer on May 4, 2017. When I was too exhausted, I was literally on my knees with 30,000 people praying around the world on our behalf.

I now understand what it means to be blanketed in prayer.

It is surreal, and provides a peace that surpasses all understanding.

hopstial3When Derek woke up, smiled, and his first words were, “Babe I’m taking you on a vacation,” I knew that God allowed his miracle to happen.

There was not a single complication. He was able to hear me, and he wasn’t spinning out of control. The only balance he had remaining was saved, and the holes were repaired on the right side.

There are no words to describe the emotions that consumed our whole family.

A miracle was performed that day.

How is Derek a year later?

 The surgeries have given him 50 – 60 percent improvement. To someone who was barely functioning, this is massive. Still, the recovery continues.

He no longer hears his internal sounds except when he is physically active or around loud noises. But it’s minimal. Compared to what he lived with before, anything is better.

We are now six months out from the second surgery. Life is coming back to Derek. But we have learned . . .

Do not compare your story to someone else’s.

For SSCD patients reading this, Derek’s case isn’t typical, due to all the damage that was done to him. That’s why we share his story to prevent what happened to him from happening to others. We want no SSCD patient to ever go through the nightmare he did.

Of course we would have loved a 100 percent miracle. But we believe it’s unfolding.

Like manna from heaven, what Derek needs is slowly coming to him. Tools, support, and aids are coming from multiple areas of life to help him cope—even thrive—through the wake of damage.

We continue to search high and low for ways to reduce the symptoms he still has, to reduce the pressure in his head and the vestibular dysfunction that was created from all the damage 5 and 1/2 years ago.

And he is rising up. Our whole family is.

Dr. Yang and Dr. Gopen were chosen to be part of this unfolding miracle and were courageous enough to take the risk and repair Derek’s skull. Not a day goes by that we aren’t thankful for what they have done.

Derek along with his doctors have inspired me to personally be a huge risk taker.

Why not?

For those of you suffering, realize that it may take many tools in your tool belt to achieve great health to allow your own miracle to unfold. Time is essential, along with a whole lot of patience. Be open-minded. Try new things. Be willing to change and step out of your comfort zone, and most of all have great FAITH.

With some of Derek’s remaining symptoms, we are finding  great solutions. A new company out of Irvine, California, Amare Global couldn’t have opened up its doors at a more perfect time. Founder and CEO Hiep Tran, through his own health challenges, wanted to share love to the world, and provide the tools, support, and aids—and at the same time focus on the missing link of nutrition through a holistic approach. Healing the gut and connecting it to the brain.

It brings tears to my eyes, watching this short video. This is our Manna from heaven. God gives you what you need, when you need it.

As much as I wanted this past year to be fast forwarded, to wish away all the pain and suffering Derek had to go through in his brutal recovery, I can now look back and see God’s hand prints on every single moment.

We made new friends who became family. Doors opened for our family that are allowing us to not only rebuild our lives from a financial nightmare, but to have great hope of living the rest of our lives in such abundance that one day we will be able to pour back love and faith into others who are suffering and give them HOPE.

I want nothing more than a quiet private life on our farm, watching the sunset with my husband, with nobody knowing who we are.

But, as my pastor recently told me, like Moses in the Bible, who did not want to lead the people to the promised land . . .

When you are chosen, you must go.

When you have a divine call in front of you, you learn that sometimes you have to do what you don’t want to do, because it’s the right thing to do.

Whatever you are going through, my prayer for you is this:

Stop trying to schedule a miracle.

Sometimes its more about the discipline of staying the course that allows the miracle to unfold.

You will never be able to rewind your life and see the beauty if you fast forward it.

Stay the course.

Sarah Hein The Pioneer.

 

 

4 thoughts on “SSCD – Rewind”

  1. Sarah, you never cease to amaze me. I always knew God had plans for you, your smile as a young child in church, pioneers and school and now as the woman who pioneered to find help for her husband, your smile never fades. Thank you for sharing this today. I broke out in shingles, it ain’t pretty, had a little pity party and then I read you story, put things in perspective. Thank you for sharing your story. Sending hugs and prayers.

    Like

  2. wow, I just came across your blog and I am inspired this Monday morning. Thank you for sharing your story, your journey and your faith. I look forward to hearing more of the miracle as it unfolds. Love the picture of Jesus guiding the surgeons, it’s beautiful and faith affirming.

    Liked by 1 person

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