SSCD – Sunsets

The past few months —YEARS—have been a series of tests for our family.  Homesickness, massive change, financial loss, and suffering beyond words, has been my family’s view.

I long for the morning when my husband wakes up before me—not hours after me—and he is symptom free, feeling great, and goes off to work.

I pray every day that I could see him do and be all the things he used to:
Dance. Crazy adventures. Ski backwards. Stay up late. Love to hear and see commotion. Worship in church. Run. Workout. Provide. Parent. Hunt. Laugh.

I want to see him able to do all these things, and not have to fake his way through them because he feels miserable.

Behind the scenes, I’m still on my knees praying every morning for my husband’s—for our entire family’s—miracle to unfold.

As I read the testimonies of others in Derek’s online support group, some wake up from surgery with a full-blown miracle where symptoms have vanished. Others’ success only lasts for a few symptom-free years, when they wake up one morning, dizzy, with the world screaming at them again.

Some patients are blessed to be diagnosed immediately. Others only have one or two symptoms. Some have dizziness or pressure in their head, while someone else can hear their eye balls move, and the sound of their own footsteps and voice is like King Kong stomping through their brain.

Then there is my husband. He has just about every single symptom you can have of SSCD—on both sides of his head. And no one figured it out for four years. Severe sound sensitivity, both internal and external. Pressure. Headaches. Fatigue. Dizziness. Vertigo.

 Sometimes life just isn’t fair.

His body is worn and tired as he listened 24/7 to the same sounds you and I do, except the world screamed. When he tries to rest, the eternal sounds and his super-bionic hearing kept him up all night. Every single night. Can you imagine hearing your food digesting, or listening to your neck muscles scratch like sandpaper every time you move your head?

Our children have been homesick and mourn their old way of life, having to give up everything to follow a crazy journey that started with a Kohl’s cashier.

What keeps a family going through all this . . . and not go insane?

Faith.

It only takes a mustard seed of faith. That’s it.

The tearful calls over the past few months with our family back home have been blessed with beauty. With strength and perseverance. With hope.

Our daughters are thriving through the muck of life, finding joy in the eye of the storm.

Our children have graduated and have received PhD’s in:

Empathy. Compassion. Sacrifice. Love.

Derek’s symptoms haven’t all miraculously left—yet.

However, amazing progress is being made. I’m convinced God wants us to savor every single miracle. One at a time.

For all the SSCD patients out there, do NOT compare your story to anyone else. Be patient. Just because you don’t wake up completely healed doesn’t mean your healing isn’t coming. For some, time will become your new best friend.

Recovery will not come without tests. But where there are tests, there are miracles.

Let me show you real proof.

Over the past few weeks, each day has been like watching Derek take five steps forward then four steps back. Step by step, he is slowing making progress.

Derek is sleeping through the night. He is able to control his headaches naturally. His eyes look brighter. Brain fog is lifting. Five weeks in to recovery, he has done a few simple vestibular exercises and for the first time in almost five years, his eyes aren’t bouncing all over the place. His balance is returning.  When he told me this for the first time, he looked like a child at Disney World.

Thank you, Jesus.

Life is returning to Derek.

After his last surgery, we were tucked away in the mountains where we craved company. We desperately wanted someone to visit us. Lonely, depressed, and anxious about our future, I did a whole lot of praying. Look what happened in just a few months being out here in California.

Campfires with female Air Force fighter pilots, and other successful career military women. Their stories of triumphs over struggles were pure inspiration to us.

I didn’t know any of these people just a few months ago.

This group was an answer to many prayers.

Still don’t believe me?

A few months ago, we were in a dry desert, living at a drug- and bedbug-infested campground. Now, Derek is resting comfortably on the beach.

 

beach25

As Derek recovers in the sand and sun, he watches his son body surf for his phy ed class, run in the sand, and meet new friends—mostly marines who love to body surf with him. This is heaven to us. Not to mention, we see helicopters and tanks and all sorts of military equipment going by us.

To top it all off, we have an ice cream truck  that literally stops right in front of our camper.

 

But the real testimony is in the skies.

The sunsets.

No two sunsets are ever the same. Just like all of us.

 

Every single day has beauty. Even in the eye of the storm. Sometimes all you have to do is open your eyes—and never compare one sunset to the next.

Each are magnificent all on their own.

 

Whether you have SSCD, a traumatic brain injury, chronic disease, a broken heart, or a broken life, this message is for you.

You are a magnificent sunset. You are uniquely beautiful. One of kind.

Even when you have SSCD, even when you are broken.

You will heal. All in God’s timing. So stop comparing. Be open minded. Try new things.

Dare to risk it all.

 Remember:

beach2You can not testify without a testimony. You cannot have a testimony without the test.

Derek’s miracle is unfolding and so will yours. In the meantime, enjoy the sunset.

Otherwise, you are missing the miracles around you.

Sarah Hein the Pioneer

 

3 thoughts on “SSCD – Sunsets”

  1. Thank you for this, Sarah! Your words give me hope & remind me that faith is all you need. We just found out that our unborn baby girl has a blood clot in her brain. The unknown is scary; it’s hard to not just curl up in a ball & cry. We are doing our best to stay positive and hoping & praying for the best. So, anyway, thank you for sharing your journey!

    Like

    1. Sweet Debbie, I have been on the road, and behind checking messages. BUT, I’m deeply praying for you, your sweet baby girl and I want to encourage you to just surrender yourself to GOD. It only takes a mustard seed of faith. That’s all. The rest is up to GOD. I believe that God uses all things, even the horrible to bring us closer to HIM, if we accept it. There is nothing that can comfort you, accept this. That no matter what happens, we will all be made perfect in heaven. This life isn’t meant to last forever. Its not. Its about the next life. I will continue to pray for you all my dear. Hugging you from afar.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s