Life doesn’t always come with a blueprint.
Sometimes you have to let God be your architect.
That is our life right now. There is no earthly guide book to this situation. We are in between two brain surgeries, on top of complications that were created from the result of a misdiagnoses that resulted in life altering damage for Derek. Leaving what has often felt like a wake of destruction.
Imagine not being able to hardly work for almost five years. Suffering every single minute of every single day. Never getting a break. Unbearable pressure in your head, migraines, the world screaming at you when everyone else’s world is quiet.
No one to guide you or advocate for you, leaving your wife, who knows nothing of this condition, to fight for you. Weeks turned to months, which turned to years of doors slamming at you telling you that they have no idea what is wrong with you and their only offering of hope is to just accept this suffering. Then there are the people in your life, who don’t see the suffering behind closed doors and tell you that you are completely crazy to keep searching, keep praying, to keep believing for a miracle. That the decisions you have made are not what they would have done.
How does a person not go through something like this and not battle with a horrible side effect of anxiety and a darkness of depression.
A person can only take so much. And that’s why I want to share this story.
To shed light onto darkness.
This past December, I was personally struggling. Anger. Frustration. A hopeless feeling had filled me. Being the very traditional person that I am, I should have been decorating a tree and enjoying the holiday season. Instead, our lives were turned upside down. The feeling of being overwhelmed consumed me.
Most people had professional movers. Not me. A few forever friends and family came to help, but when you are moving after 20 years of marriage, it’s amazing the junk you collect. Most people when they move have a plan. We didn’t have a clue what our plan was. Except we were moving into the basement of some friends and dedicating our lives to finding a diagnosis and cure for Derek.
Our move happened incredibly fast. Multiple decisions were being thrown at me every minute it seemed. My mover on the last day, happened to be Derek’s Aunt.
Aunt Gail was sick, in terrible pain, and yet refused to be any other place than helping Derek and I.
She didn’t just have a cold or the flu, she had pancreatic cancer with literally months left to live.
Looking at her in my house amongst the boxes, I remember thinking, that my life hit an all-time low. My mover for the day was a terminally ill person.
As Gail cleaned out my kitchen cabinets, she would hold an item and say,
“Throw or keep?”
The first several times she asked me, I wanted to burst into tears. My mind played tug of war. That bowl, glass, vase, were all items from my past that had a beautiful memory. What if I needed that in the future?
The thought of the future is what scared me the most. I didn’t know what the future was going to look like.
Exhausted from making so many decisions, and feeling like our lives were being ripped from us, I could hardly speak.
No wife or mother would ever vision this life for their family.
It was like Aunt Gail could read my mind. Grabbing my shoulders she looked deep into my eyes and said,
“Sarah, are you really going to use this bowl in the next year of your life?
Is it really worth keeping it?”
My view before me was looking into the eyes of a woman who had been given a death sentence. Only months left to live.
That view hit me. Hard. Right in the gut.
Would I really need this bowl in the next year?
When she put it like that, heck no. It was a bowl I never used.
As my brain began to register what she was teaching me, we both burst into laughter.
The next several hours, Aunt Gail and I literally danced in my kitchen like two crazy woman throwing away the garbage of my life. Joy was released as things went flying through the air into a garbage basket.
“Get rid of the junk in the trunk,” she would say.
Because in the end, none of it matters.
Aunt Gail taught me to let go. Painful at first. Stupid if you really think about how shallow I was being.
But the release was magnificent.
As the day went on, Gail and I purged. Letting go a vision I once had for my family, she taught me to step into the vision God had for me.
She taught me that even when you didn’t have all the answers, it didn’t mater.
Only ultimate trust in our heavenly Father mattered.
It was the very next day we sold our home, and that evening, the Kohl’s cashier gave me the link to the Dr. Oz show that eventually led in the weeks to come, the miraculous story of the unfolding miracle. The very thing I had prayed for years, was graced upon us.
A diagnosis and possible cure for Derek.
But Aunt Gail didn’t stop there. As she was battling with her own horrific terminal illness, she coached me from afar. Without even realizing it she became the greatest life coach I have ever had.
The grueling months we lived in California as Derek underwent a huge surgery with a brutal recovery, she called and texted me every single day.
It was during this time, I confided in her that we were struggling with a darkness. This was unbelievably hard. We gave up everything, were across the country from our support network. Away from our kids. There were days I didn’t want to get out of bed. Weeks that Derek’s suffering was so great, there were no words to describe it.
And yet, God always gives you what you need when you need it.
He gave us Aunt Gail.
One day she called me, and could sense something was wrong. “What’s wrong honey?”
I can’t explain it, but something prompted me to share the darkness we were in. Embarrassed that I was sharing this with someone who was facing the most difficult situation in their life- death, I felt like the ultimate loser.
But Aunt Gail understood.
And that’s when, from her own death bed, she encouraged us.
Simply by being the greatest example to us.
She wasn’t lying on her death bed. She was living. Every second of every day she had left, she was checking off her bucketlist. Even if it was from bed.
Always focusing on others, she asked me what gave Derek joy or comfort. And that’s when it hit me. The outdoors always seemed to comfort him. Noise didn’t bother him as much outdoors. There are no walls for sound to bounce off of. And he had a great appreciation for the beauty of nature. Nature was borderless, which always allowed Derek to dream.
“Sarah, get Derek outdoors. Get him into nature. You both need it. Go see God’s creation.”
Since Derek had several months in between surgeries, we had to make another big decision. Do we go back home or stay in Califonria? Aunt Gail encouraged us to surround ourselves with people who would build us up, not break us down. Stand with us, pray with us and most of all believe with us.
Gail was right. It was time to bring Derek home. He needed to be surrounded by people who would build him up as much as they could before his next big surgery.
Derek and I began to look at all the parks in the area and on our way back home. There were five national parks right on the way in Utah alone.
Light came back into our life. Derek started to dream again, and I did too. Though he couldn’t travel much yet, for the sound of the tires on the road created a horrific pressure in his head, we decided to hit as many parks as we could on our way home. It was like God had laid a new blueprint out right in front of us. We could drive a few hours every couple of days. Allowing him to rest and I worked around our traveling and then treated Derek and Gavin to a national or state park.
Watching Derek regain his strength and find a new balance in God’s creation was one of the most beautiful things I have ever witnessed.
What a beautiful life lesson for our son Gavin to witness.
Aunt Gail taught us that a disability is only the ability to dream on a deeper level.
Most think a person without legs will never run a race again, but the person without legs says, I wanted to feel the breeze in my face, as they cross a finish line.
Most think a blind person will never climb a mountain again, but the blind person says, I wanted to feel the world again, as they reach the next summit.
Most think a person with a debilitating coniditon will never dream again, but Derek Hein says from his hospital bed the moment he wakes up from brain surgery, “Babe, I’m taking you on a vacation again.”
Aunt Gail taught us, to not live like most people. Because most people just don’t get it.
Most have lost the ability to dream.
She coached us every day that if an opportunity arises, to seize it. Because you have one chance at this life.
When Gail was first diagnosed with cancer, she approached us with her dream. She always wanted to have a barn dance for her 40th anniversary.
Most would have thought that was too much for Derek and I to take on. For we were going through our own challenges. Most would have thought that it was too much for Gail as she was preparing for the greatest battle of her life.
But Derek and his Aunt Gail aren’t like most.
We hosted the most beautiful barn dance we have ever put on, and Aunt Gail was granted one the best days of her life. Music, laughter and all the people she loved the most surrounded her as God blessed her with one of the most beautiful fall evenings I had ever seen.
The last time we saw Aunt Gail was before we left for California. Determined to see our new home on wheels, with each step she took pain was evident. But that didn’t stop Gail. She toured our new home, delighted that Derek would have a real mattress to sleep on, and a comfortable place to recoup for as long as it took. She approved of our decision that our camper was the absolute perfect choice. Giving Derek a comfortable place to recoup from two massive surgeries, a place for me to work out of, and Gavin to have school was the perfect solution for our needs. Our home on wheels was the exact flexibility we needed in the uncertain time in our life. Of all people, Aunt Gail understood this.
As we visited with her, we all knew in our hearts, this would be more than likely the last time on earth we would see her.
She grabbed Derek’s arm, and told him, “Derek don’t ever stop fighting and believing in your miracle!”
She loved our Snickerdoodle as much as we do and hugged her one last time.
She always loved on our Scarlett as if she was her own granddaughter. Because to Gail, she was.
As I walked her out to the car, she looked into my eyes one last time and said,
“You do whatever it takes. Go after his miracle. Don’t hold back Sarah. Go for it.”
And I made a promise to her, that I intend to keep.
Aunt Gail, who was the most courageous, selfless, giving, amazing woman I know, received her ultimate miracle. The gift of heaven. She suffers no more and I can only imagine her in heaven, now organizing the rooms in God’s house for all her loved ones to join her for the greatest family reunion of all. Because that was Auntie Gail.
She was always thinking of others.
Derek and I were determined to make it back for Aunt Gail’s funeral to celebrate the life of an amazing angel on earth. And walking into her celebration of life, I knew that soon I would share all she taught by being the example. Just like she had done.
For the past month, we have lived every moment of every day in between brain surgeries to the fullest, just as she encouraged.
The Lord has blessed us with people in our lives that don’t think like most. Thanks to our dear friend Janelle, she arranged for Gavin to have his dream come true. He back packed in the Rocky Mountains at a Christian camp with his buddy Tanner from Texas. Every teenage boys dream. To live in nature and not shower for a week.
Shawn and Carmen thank you for giving us time at your amazing lake home and allowing Derek to heal in nature.
Our children, nieces and nephews, family and loved ones have been our top priority in between working, to spend as much time with them as we can.
Are oldest daughter got engaged, which means we are gaining a wonderful son-in-law into our growing family. And couldn’t be happier for the three of them. Wedding planning is going to be so much fun. But it is the beautiful new beginning that excites us the most. She deserves an abundance of happiness for all she has endured. And is a shining example that God does bless the faithful.
We are seizing every opportunity that comes our way. Surrounding ourselves with the people that matter the most.
The darkness has vanished.
For it is our greatest fears, where our greatest calling awaits.
I made a promise I intend to keep. To see Derek’s miracle unfold completely. Just as Uncle Jim did for Aunt Gail. Thank you Uncle Jim for being my example of the world’s greatest caregiver and being there to Aunt Gail met Jesus.
October 12th, Derek will enter the second surgery. Let’s show the world that the miracle will unfold completely for Derek. Because, we have a whole lot of paying it forward to do in the future. Derek and I have been given a second chance at life and we intend to use it wisely.
My prayer for each and every one of you is throw away your garbage. Keep what is important.
And don’t hold back. Go for it.
Sarah Hein, the Pioneer