SSCD- Pioneering Forward

Could you let it all go, to follow blind faith?

Even when others think you are absolutely crazy?

One year ago, we put our house up for sale to live on the road and go wherever we needed to go, in hopes to find a diagnosis and cure for Derek.

Since I was a little girl, I was born to be a pioneer. Pioneers don’t settle, and I wasn’t about to settle with an unknown illness for my husband.

Here we are—one year later—living on a beach in a camper.  The ultimate hippie-salt life. This country boy and girl, stepped out of their comfort zone in every way. Our cross-country journey has submerged us in new cultures, given us a front-row seat to movie sets, allowed us to watch marines training in the ocean and everything in between. Our life is never dull.

When we jumped all in, our eyes miraculously opened up. We witnessed how God had already jumped ahead of us.

All the doors that closed in our life—though devastating at first—exposed new doors to be opened.

Those new doors, unknown, frightening, and even scary at first, eventually led us to a new trail of hope, discovery, and ultimate freedom.

beachlife8As adventurous and romantic this may sound, the real reality is this rare condition still has many unknowns.

At our last appointment with Dr. Yang, the neurosurgeon from UCLA, he shared his passion once again as he beautifully said, “Derek, I can’t fix your bone like God can. We can’t make it perfect. Only He can. Dr. Gopen and I did our best to fix it, and that’s all we can do. The rest is up to God. But I’m confident that improvement will come and that’s what we hope for.”

Ayang5s Dr. Yang removed Derek’s staples, he shared with us how many people are following Derek’s journey. Through Derek’s story, hope is encouraging others that are dealing with many illnesses. Dr. Yang encouraged me to keep writing. I made him a promise I intend to keep.

I couldn’t help but to smile from ear to ear because, just seven months ago, this man was a stranger who I saw on a Dr. Oz episode sent to me by a Kohl’s cashier. In an act of faith,  I put my sick husband on a plane. Now this same man will forever be a life-long friend, all because he performed two soon-to-be life-changing surgeries for my husband. To top it off, he was encouraging me to write. He follows my blog. What an honor . . . that this amazing surgeon, with the most humble of hearts, takes the time to read a patient’s wife’s blog.

 To hear him say Derek’s story is offering HOPE to others who are suffering gave me goosebumps.

For we finally are paying it forward. Something we have envisioned for years. We simply want to serve others.

beachlife7Dr. Gopen, the otolaryngologist at UCLA with boundless compassion, will walk through fire for his patients. He’s a great risk-taker, yet when he looks into the patients’ eyes, he sees right to their souls. You know he will give you his best.  He cares deeply.  He was very pleased with Derek’s progress so far. Anytime I was concerned about Derek, this man texted me immediately. This blows my mind. Thankfully I have only needed to reach out to him a few times, and I’m eternally grateful for his huge, compassionate heart towards his patients. His encouragement to Derek was to give himself time to heal. In the next few months, we pray Derek’s symptoms will gradually decrease. Ultimately to be symptom-free is what we pray for daily. As they broke down the timeline of expectations in the months to come, the next three months we are hopeful to see more positive signs, and healing could last all the way up to the next 18 months.

Patience. We must be patient.

Easier said than done.

The past few weeks have been brutal for Derek. But the doctors weren’t concerned and, therefore, we aren’t either. Derek has a grit that I have never seen before. Determined to beat this, we don’t focus on these past weeks. Instead we pray through each day, believing his miracle is unfolding.

His head just went through two major surgeries and it needs time to settle.

A HUGE win is this: Derek is not worse. He can walk without a walker or cane. He can hear. We are eternally grateful because we were told he would never have balance again if went forward with this. If we had not kept an open mind or if we had listened to what everyone else said, we wouldn’t be here. I can assure you he is not worse off.

I made a promise to these two doctors and to my husband to keep writing, to keep blogging. All to create an awareness about this disease because it is still largely unknown, especially in the Midwest.  The awareness is growing. I’m shocked by how word-of-mouth and social media have made it possible for so many patients to reach out to me from around the country. They too may have SSCD or have been diagnosed and feel lost as we once did.

Derek and I find great joy and passion in guiding these patients to the pioneer trail we blazed to UCLA. It heals our wounds that we may be able to prevent what happened to Derek. Finding ultimate joy and happiness in hearing patients getting diagnosed within weeks or months—not years—is pure inspiration.

Many patients have said, “I can’t imagine your husband living like this for years.”

I don’t think I will ever hear this and not get tears in my eyes. Our children and I witnessed Derek’s suffering every single day.

 

 

Though I don’t know the reason why this all happened, I do know we were broken and humbled to our knees. Through this brokenness, we were refined.

What’s next for us? Great question.
We have learned to not look too far ahead. We are keeping all options open.

Living a holistic, healthy, organic life and keeping Derek as healthy as possible is key. Eating a non-inflammatory diet allows us to have a greater handle on his recovery. He is sleeping through the night—and I wake up grateful. For almost five years, this poor man barely slept. Keeping his pain and headaches controlled through natural means makes me passionate to share what we are doing, in hopes of helping someone else. There are both good days and bad with the dizziness, feeling off-balance, and pressure in his head.

Through all of this, I have been writing a series of books, and the first one is close to being published. This is something I would have never done, had this not all happened. I feel a divine calling to share the story and give glory to God has encouraged me to record and document our journey.

For now, the BEST medicine—besides all your prayers—is our phone calls from our kids, videos from little Scarlett, and having Gavin here. He joined us a week ago.

Camp Pendleton has become a piece of heaven to us. This place is therapeutic for Derek, who sits with his toes in the sand. Gavin and I live to make him laugh. The rejuvenation of sun, sand, the ocean, puts a smile on his face, even during the darkest times.

I don’t grieve anymore that our kids do not have a normal life. Normal is way overrated.

This, instead, has prepared them for life.

I look at Gavin making friends who are marines, body surfing in the ocean, learning new things, experiencing things he never would have, and handling loss, grief, homesickness. These have built him to be stronger than most boys his age.

Our daughters know how to be resilient, to persevere when things don’t go your way in life.  Be open-minded. Take risks. Jump. Share the story and give God the glory.

To anyone struggling out there:

Keep “Pioneering Forward.”

The road less-traveled is where the unopened doors are waiting, just for you.

All you have to do is take a leap of faith, and walk through.

Sarah Hein, the Pioneer

 

 

 

 

 

4 thoughts on “SSCD- Pioneering Forward”

  1. God Bless you both & your family through the healing process. You are the most faith driven, smartest & strongest woman always perceptive to all the signs God has sent to you. I bet you know that swimming uses almost every muscle in the body. So good you are there on the beach. May the Angels surround you always. You blog is the best keeps me going. thanks!

    Alyce

    Like

  2. If you have to beach camp, I’ve heard Camp Pendelton is a great place to do so. So cool how the Lord provides for ALL of our needs. I loved these lines you wrote: “I don’t grieve anymore that our kids do not have a normal life. Normal is way overrated. This, instead, has prepared them for life”. So many times I resent going through hard times but you reminded me that the hard prepares you for life. I also love the analogy of being trained by God through trials to become the son or daughter that reflects Him.

    Liked by 1 person

  3. Hi Sarah,

     

    Thanks for the update – I pray for Derek every day,

     

    Here is an update on my situation:

     

    I’m home from three difficult weeks and three surgical procedures where the doctors were trying to repair the damage to my bladder which was caused by radiation cystitis.  However, the damage was too extensive so I am now hooked up to two nephrostomy tubes, one implanted in my right kidney and one implanted in my left kidney – to bypass my bladder.  The best case healing option will take several months – I am praying that I will qualify for this program and that it will work.

     

    So, I am cutting back on my business responsibilities and my personal activities while I concentrate on my recovery.  I am planning to beat this!

     

    Uncle Dick

    Like

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