The Thanksgiving Letter

This Thanksgiving, I have an unusual thanks to give.

Recently, I met a wonderful person who was struggling with a rare disease. Wanting to encourage her, I sent her to my blog and hoped that by reading my husband’s journey she would be empowered to never give up.

To be honest, I write these blogs, but I don’t actually go in and read the blog. For some reason, this time I began to scroll down at all the entries over the years. I reminisced  about the years that we have been on this journey—and it all hit me. It was emotional and humbling to read our own journey, our story of ashes turned to beauty. It was also a reminder that this journey, this struggle isn’t over yet.

Every single day is still like wading through muck. Though Derek has come so far, has beaten so many odds, he still hasn’t experienced complete healing.

Lately, I have been struggling through a whirlwind of emotions. Everyday is a choice. I can choose to be a victim and live in anger over a misdiagnosis and damage that changed my husbands life, or become a champion within and keep fighting.

Every Thanksgiving, I take time to reflect on what I’m thankful for. I have an abundance of things to be thankful for. Our lives have been rewritten. However, there is one thing that really sums it all up.

I’m grateful for a letter that I have kept. I think of this letter every single day. This letter has motivated me beyond measure.

mayo letter Mayo Clinic. Feb. 11, 2014.  We had battled for 14 months and 8 appeals just to get this letter. It began with a 13-month fight. Because no doctor was overseeing our efforts, we had to do it on our own, which led to a massive paperwork error. We traveled all the way to Minnesota only to find out we were sent to the wrong doctor and had to start all over again. Second time I fought back stronger, had learned the ropes and got him back one month later, only to receive this news:

“Unfortunately this damage is permanent . . .  you only have a 1:100 chance for improved symptoms and and a 1:20 chance of irritating the ear further leading to worsened dizziness symptoms.”earsuger1

Imagine the devastation we felt reading this for the first time, the hopelessness. I will never forget that moment. But something changed in me the day I read it.

I refused to believe it.

God doesn’t believe in permanent. And neither do I. These odds have already been proven wrong. Derek has made it through four surgeries since, and has made amazing progress.

I’m most certainly NOT putting down Mayo Clinic. They have saved countless lives. What I am saying is this: It’s one opinion. And in Derek’s case, their opinion happened to be wrong.

I’m so thankful we listened to our gut instinct. The whisper God put in our mind to never settle was the best whisper we ever listened to. We made sacrifices, gave up, let go, and God took over.

December will mark Derek’s sixth year of battling this. Throughout this journey, there are seasons of silence because we feel life has just continued on for everyone else. Sometimes I don’t write because it seems that our news is old news to everyone else. I even hesitated on if I should share this blog.

But our reality is that this isn’t old. It’s every day.

Why is Derek choosing another surgery? Why are we doing exactly what everyone around the country told us not do? After all, the odds are most certainly NOT in our favor.

However, if we do nothing else, nothing will change. And there is clearly something still wrong on the damaged left side. We didn’t come all this way—six surgeries in his head—to stop now. We want massive improvement.

No doctor has been brave enough to attempt to go back and see what is happening. Now that we have Derek’s SSCD under control, it leaves one last attempt, to go back into the live hornet’s nest, assess the damage, and hopefully reconstruct whatever was destroyed. Derek still feels rough enough that he is willing to face this again.

earsurgeryWhen I saw the name of the surgery, middle ear exploration, it gave me goosebumps.

We continue to blaze new trails. When I came up with my pen name—Sarah Hein the Pioneer—three years ago, I had no idea how much that name summed up our destiny.

It’s become a part of our DNA. We. Are. Pioneers!

Pray with me on Dec. 4. (Pray with me before Dec. 4, too!)
• That this be the final leg of this journey.
• That Dr. Gopen is able to discover the remaining damage, repair it.
• That, for once and for all, that the walls of Jericho come crashing down for my husband on this seventh surgery.
• That there will be NO complications
• That God removes all anxiety and worry.
• That he wakes up steady—not spinning from vertigo.

If God says no to any other these prayers, please know that we will NOT give up. I have a couple of friends whose husbands went home to heaven. They weren’t given the chance to fight on this earth. They inspire me to continue on, even though I’m weary at times. We have been given the gift to keep fighting. So fight we will. No matter how long it takes.

We will fly out on Dec. 3. Because Derek will not be able to fly for several weeks after the surgery, we will have to drive home when he is well enough and avoid the Rocky Mountains due to elevation. It will be a long trip home. We weren’t home last year for Christmas, and we will do whatever it takes to be home this year.

We have chosen to live life to the fullest. Derek has not given up. Even though he still suffers, he fights the good fight. Recently we went to Cancun on an all-expense paid trip through our new partnered company. Derek inspired everyone by deep sea fishing, snorkeling off a catamaran, cave exploring, and building bikes at a humanitarian project. Though he struggled through it, he was there. He did it.

So this year, my unusual thanks is for a letter that once devastated us, giving us unfavorable odds. However, throughout this journey, that very letter instead gave us a pioneering strength to overcome the impossible. Courage came from that letter, to take daring risks, blaze new trails, and live a life most read about, not experience.

We know you have battles too. Fight the good fight in your own life, against whatever obstacle comes your way. May we be a small example of the power of prayer, never giving up, and listening to GOD, not humans. Try it. It works.

This Thanksgiving, may we be thankful for the hardships. They bless us with character that only comes from above.

We are thankful for all of you!  Happy Thanksgiving!

Sarah Hein, the PIONEER


1 thought on “The Thanksgiving Letter”

  1. As always, we will be praying for Derek, before, during and after his surgery! I too truly believe there is a rainbow coming at the end of this journey!


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