We didn’t come this far to quit now.
October 12 marked one year from Derek’s second brain surgery. We both avoided the day because we knew this journey wasn’t over. Even though the SSCD surgeries fixed some important structural issues and Derek has made remarkable progress, Dr. Yang and Dr. Gopen from UCLA agree that something is still clearly not right.
Now that they have the symptoms of SSCD covered, they shared there is more in store for Derek. That’s because Derek is still struggling with the trauma and damage caused by his first surgery on Dec. 14, 2012. Because of a misdiagnosis and surgery that should not have happened, Derek presents a very complicated case.
On a phone call with the doctors, I had to hear my husband say, for the second time, “I don’t want to live like this. It’s time. Let’s go back in.” My courageous husband is ready once again to be a warrior. And Dr. Gopen is willing to accept the challenge.
On Dec. 4, Derek will go back to Los Angeles, California, for exploratory surgery. We suspect that it might be a possible fistula—a tear by his inner ear, the oval window. His original implant busted right into that delicate area almost six years ago.
We may be looking at possible reconstructive surgery, but we won’t know till we go in. Right now, only God knows what will or won’t be revealed.
Years ago, Mayo Clinic labeled Derek permanently damaged and told us he had less than a one percent change to improve. Up to this point, we never accepted that.
Is it time to finally accept this?
I personally prayed deeply over this question and am at great peace with an answer. We will continue on. WE HAVE NEVER CHOSEN TO ACCEPT THIS! Do we have our answer yet? Not quite. But if we have to spend the rest of our lives figuring this out, then so be it. As long as we are both alive, we will never stop. That’s why I use the hashtag #cantstopwontstop.
Mayo Clinic was one of many opinions Derek has received over the years. And we are overjoyed to tell you they were wrong. Derek has already improved beyond their expectations. Still, the horrific pressure on his left side is still debilitating and for some reason has increased the past few months.
What is every day like for Derek? His full-time job is to try to decrease pressure in his head. No one wants that job. Mornings suck. After laying down all night, he struggles to get up. Massive headaches and head pressure burden him. He takes his holistic products, goes to acupuncture 2-3 times per week, and receives vestibular therapy 2-3 times per week. These perk him up a bit, but he is completely worn out at end the day. Even though he doesn’t hear the internal noises in his head anymore, his pressure continues to builds. But… he is on NO medications, which has been a huge win.
Both eastern and western doctors are seeing that Derek has symptoms of a possible fistula. The problem is, it’s not showing up at all on any tests. However, that isn’t completely abnormal. Still, we don’t exactly get the warm fuzzies from the unknown. It would be NICE to KNOW what on earth is going on!
Which means, here we go again. Back into a hornets’ nest.
And, again, back to our motto: Greater the risk, greater the reward.
There are many unknowns. We have no idea how Derek will come out of this surgery or what they will find. We have no idea how long are our stay in California will be. And then there’s the matter of dealing with lovely insurance companies! (Yes, please take that sarcastically.) We sold our camper earlier this year, so we have to figure out lodging. Because Derek won’t be able to fly for several weeks after the surgery, we need to drive home, avoiding elevation at all costs. So we have to decide if we should fly out and rent a car for the drive back home? Should we drive both ways? What route home will help us avoid the majestic Rocky Mountains, which will make our trip that much longer? What about trying to avoid winter weather?
And then there is Christmas. We haven’t had a normal Christmas since 2011.
Do not for one moment feel sorry for us. Not one bit. I’m only sharing this to share that God already knows how he will part the seas for us. I constantly look back at what HE has already done, so instead of getting hung up on all the details, we are trusting that they will unfold just as they are meant to unfold.
Plus, we know that God strategically prepared us for this moment. I personally feel the best I have felt in years. After our family has chosen to focus on self-care, we are emotionally, physically and spiritually ready as one can be for this next journey.
My morning devotions have inspired us greatly, showing us that there is always hope. Sometimes it takes being downright persistent. Not giving up. Not giving in. Just patiently staying the course.
Naaman was healed after washing SEVEN times. 2 Kings 5:14
Elijah bent down and prayed, and on the SEVENTH time it rained. 1 Kings 18:41-44
It was by faith that the people of Israel marched around Jericho for SEVEN days, and the walls came crashing down. Hebrews 11: 30
Interestingly enough, this will be Derek’s SEVENTH surgery in his head.
Bring it on!
We choose to continue to believe that “this happened so the works of God may be displayed through him.”
Once we find out times for Derek’s surgery, either the night before or morning of, I will once again do a JERICHO WALK around the entire UCLA complex.
Join me. Either run or walk seven laps around whatever your heart desires! Send us pictures or videos. Let’s start a movement. Pray circles around whatever you are struggling with or pray for someone you know who is struggling. While you are at it, throw in a few prayers for the walls to come crashing down for my sweet Derek.
God still works miracles! Believe with me!
Before we head to California, we are taking the next week and heading to Cancun for our new business. With our business partners, we are celebrating the leap of faith we all took to join this incredible mission and serve others’ —holistically. This allows our family to be around the most positive, humble people and soak up some much needed sun. We aren’t only going to celebrate and relax, though. We are also going to serve! Through a humanitarian project, we are building bikes for those in need. Derek refused to let anything stop him from serving others. He WILL be there!
May Derek’s strength and courageous attitude encourage you, to not stop whatever you are facing.
Here’s to NEVER GIVING UP!
Sarah Hein the Pioneer
Even in the eye of the storm, I truly am feeling the best I have ever felt. If you are struggling, reach out to me, and I would love to share what is working for us.