SSCD – Island life

Island living has always attracted Derek and I. It dawned on me today how  obsessed Derek has been with the dream that one day he is going to purchase a tropical island. A small resort where all our loved ones can come and visit. Even recruit others to live. A place to laugh, dance, and be adventurous. Teach snorkeling in the ocean for a career.  A swimming suit will be his wardrobe.

Tropical settings,  toes in the sand, a drink in our hands….

Who wouldn’t be attracted to this right?

I now understand why Derek has this obsessive dream. He has been islander for 4 1/2 years. Except the island he has lived on is incredibly remote. Not many know of it. Very few even come to visit it, for it consists  of the most harsh conditions imaginable.

It’s called the Island of SSCD.

The islanders that live there are very isolated from the rest of the world. For island life is the only way they can survive.  The difference with this island is its the furthest thing away from being tropical. This island is full of a harshness that most don’t survive. Screeching sounds that are like little knives constantly stabbing your head of amplified noise. The chaotic symphony of horrendous noise only isolates the islanders to searching for the quietest place on the island. But these islanders are tough. Because even when the island is quiet, within their heads a hurricane of noise is always brewing. Always. Their world is never quiet. Never peaceful. There is nothing tropical about this place.

Derek has lived on this remote island for years now. And I have had a front row seat to watching the harsh conditions of this island. His dreams of a tropical paradise island is what gives him hope. Together we dream all the time of a different island.

A peaceful place. That island is now in our horizon. Almost within our grasp.

heart8Derek is 1 month out from SSCD surgery. His case is most certainly more complicated by all the damage from previous surgeries.  So if there are any other SSCD patients out there, stay strong. Don’t compare. Each situation is different. For Derek its been a pretty tough recovery. But Derek is as tough as they come. Its not as harsh as when his implant moved over fours ago and he was spinning out of control for 5 months.

Regardless, life on this harsh island of SSCD is also just as hard on your loved ones. We decided last minute to send our son Gavin home with our daughter Whitney for a few weeks. To give him a bit of break, and attend his 8th grade graduation. Derek just needs to rest. Time is his best friend right now to see if he can slowly leave this horrendous island he has been on. Taking our kids to the airport was one of the hardest days of my life. Watching them walk through security and vanish into a sea of people, I sobbed such a hard sob that I can’t even explain. My dream as a Mom was to be there for all the big events of my children’s life. To be across country from them, missing out on those moments tears me up something awful. The graduations, weddings, family events this summer- we are missing out on everything sacred to us. Hard to swallow.

Driving back to our campground in the nightmare traffic of LA, I cried silently behind my sunglasses the entire way home. (2 hours)

Why God? Why here?  Why are we the furthest west of the USA I can possibly be from my children and granddaughter?

And then…

the sun rose the next morning.

I grabbed my tea, and stepping outside our camper, this was my view.heart1

Looking at the magnificent site in front of me, It was as if God said,

“Sarah I carved this view just for you and Derek. It’s all going to be O.K. You are exactly where I want you to be. Just sit back and enjoy the ride.”

Cranking my worship music, I sat down soaking in this view.

And listen to this song.  https://www.youtube.com/watch?v=KBD18rsVJHk

The beautiful reminder of the little sand mountain Gavin made the day before he left to leave his mark here made me smile.

This is the day the Lord has made. Let us rejoice and be glad in it.

I knew today would be a great day.

heart7A few hours later, God sent some angels to our remote island. First came Megan. She lives in Colorado and was on a business trip and took time out of her busy schedule to see us.  Her adventurous spirit poured into us. Just seeing  her I knew, that God was reminding us He always gives us what we need. Thank you Megan. It was amazing to have you visit us in our new home in the mountains.

Next, more angels came. Megan was able to witness it. heart4My beautiful cousin Maria and her amazing husband Rod came to see us. They are from northern California.

What’s the big deal on my cousin coming to see us?  It’s was a huge deal. You see, Maria and I never knew each other. We didn’t meet till a few years ago. This was the first time they ever met Derek. It was an amazing reunion. We laughed, we cried, and she is the older sister I have always wanted. The unbelievable resemblances we both had in looks and personality were amazing. She could finish my sentences and I hers.

Thank you Jesus for this incredible reunion.

ruthclarkWhen our dog became suddenly ill, and we had no clue who to even call, another angel was sent our way. Our amazing sweet  beautiful friend and veterinarian  back home, Ruth from Lake Mills,  came to our rescue. Ruth coached me what to do… over Memorial weekend. She was even on vacation in Arizona and still took the time to help sweet Snickerdoodle.

snickerdoodleSnickerdoodles is back and ready to conquer the world. God bless you Ruth. If anyone back in Wisconsin ever needs of a fantastic vet, we know the BEST recommendation!!!

The recovery has been tough, but we have definitely noticed some great signs in Derek. Yesterday he had his BEST day yet. Life IS coming back to his eyes. Incredibly exiting to see. We pray for more of these days to come.

 In my devotional reading this morning, I read this;

Don’t try to manufacture your own miracles.

Don’t try to answer your own prayers.

Don’t try to do God’s job for Him.

Stay humble. Stay patient. Stay focused. Keep circling.heart3

We are confident that God led us to Dr. Yang and Dr. Gopen. The way we happened upon these doctors is a miracle. The days when we feel isolated, lonely, and frustrated we allow ourselves to cry when we need to. But we remain  focused on the tasks that we have been miraculously led towards. Everyday I write, work on business, parent from afar. Derek is taking the next few weeks, and laying very low. Sleeping a lot, resting, and dreaming. He is mapping out our next adventures. As we wait to see what lies ahead, what surgeries he may need next, he plans to visit as many national parks with his kids as he can. Nature fueled with faith is the best healing medicine for the soul.

He is casting visions for our future.

When the hard moments happen, I have learned that they simply  ‘flavor ‘our life up.

Naturally, I first look up at the heavens and say… “REALLY GOD”?

But then,  I have learned to find the humor. My brothers and sister taught me this beautiful gift when we were little. Thank you Dave, Rhoda, Pete, and Phil. When I laugh at the situations I find myself in, I think of all of you.

Like when I’m doing laundry in the campground laundromat next to a man who tells me his camper is infested with bed bugs. Yes, I said bed bugs.  As he is putting his clothes into dryers next to MY CLOTHES. His intent is to “fry the little suckers”.

I about died.

Or the rattle snakes I have to constantly be on the look out for. I have seen pictures from other campers of HUGE rattlesnakes right in their campsites. Terrified of snakes now, especially for Snickerdoodle.

 Movies are being filmed all around us. Paramount pictures is doing a big movie called Thunder to be released next year, just down the road. The other night a horror movie was being filmed in the grocery store. Film crews are everywhere. It’s cool at first. But after awhile, it becomes a pain.  So instead, I find adventure in spying to see if I can get a glimpse of someone famous.

These the are the moments that add color to our life. They give us something to truly laugh at. Because I can’t make any of this up.

kidsLately I have reflected on a thought over our children. Derek and I often said to each other in the past ‘If anything ever happened to us, we want to raise very independent children who could not just survive, but thrive.’

Never did I really think  a time like this would come.

Thank you God for three kids, and beautiful little Scarlett bug, who are thriving and working through all they need to. Listening to our children over the phone, I’m in awe of their maturity, commitment to our family and each other. They have all willingly sacrificed and are making the best out of this situation. Their laughter and humor is music to me.

When I even begin to worry about bills, work, what is yet to come, all I can say is this. When you really jump  all in and trust in God, He will provide. He will take care of you and provisions like manna from heaven will be at your doorstep.

When you least expect it. For the angels of provision over the past four years, and you know who you are…. THANK YOU from the bottom of our hearts.

We have a choice. To sit here in a pool of tears feeling sorry for ourselves living on this harsh remote island, and all we are missing out on,

Or

Be thankful for all the miracles that we have been blessed with.

Time and time again, when we feel like we can’t go on, God uses so many of you to speak right to us. We hear God loud and clear through all of you.

Right now, God wants us here. We have accepted it.

But get ready world, soon…very soon… Derek will be on a beautiful tropical island living life to the fullest. And I’m going to live the rest of our lives thanking the chain of beautiful events our entire life that led us to this moment in time.

Sarah Hein the Pioneer

3 thoughts on “SSCD – Island life”

  1. Isaiah 61:1-3
    The Year of the Lord’s Favor
    The Spirit of the Lord God is upon me,
    because the Lord has anointed me
    to bring good news to the poor;
    he has sent me to bind up the brokenhearted,
    to proclaim liberty to the captives,
    and the opening of the prison to those who are bound;
    to proclaim the year of the Lord’s favor,
    and the day of vengeance of our God;
    to comfort all who mourn;
    to grant to those who mourn in Zion—
    to give them a beautiful headdress instead of ashes,
    the oil of gladness instead of mourning,
    the garment of praise instead of a faint spirit;
    that they may be called oaks of righteousness,
    the planting of the Lord, that he may be glorified.

    Beauty from ashes…. “that He may be glorified.”
    That’s the thought that pervades in my mind as I read your journals, this entry in particular. Continued prayers for strength and for joy in this journey. God is, was and always will be good. 💗⚓️

    Like

  2. Dearest Sarah,

    Another beautiful blog. We are truly blessed with a sister like relationship that could only come from God. There are so few people in my life that I feel so natural with from the start. Someone whose sentences I can truly finish. That is a gift from God.

    I love your post today about : Don’t try to manufacture your own miracles.

    Don’t try to answer your own prayers. Don’t try to do God’s job for Him.

    That is totally what I have been trying to do with Karin. It hit me smack between the eyeballs when I read your words. There are all these old “mother” tapes playing in my head. Her father died and maybe you did not help her enough. She had anorexia in college and she needs your help to boost herself confidence. She is at a disadvantage for getting a job in the US because she went to Africa. You need to help her find a job.

    All of these are lies! I know that now. Karin for someone reason is “stuck” in a season of her life. It is not my job to slap her out of it. God needs to do it his way. She is not putting her career first. She is putting God first which is totally the right way to go but…she seems to put all her energy into her church and her community group. Then she wanted to go to Africa and spent a year of her life on the Mission field in Mozambique. Again a noble cause that will produce so many blessings in her life but never took the reins back to seek a career path. She got a job at a second rate Christian school with no technology or academic challenge because she was afraid and had culture shock.

    She realizes in January that she can’t live off the little money she makes at her job and announces that she is seeking a new job next school year. We thought wow, she finally gets it but then she does not put finding a job first. She plans to go to Mozambique for 19 days to visit. Again a noble cause but not putting her life occupation first…teaching. She applies for schools with NO technology experience and NO continuing education experience and she is shocked when she is turned down by schools. Her credential is about to run out but she does little to no research on how to get that credential extended. I get her the names of someone at LMU to reach out to. Another mistake for mom. She needs to come up with her own solutions.

    She tells me mom, God will have me where he wants me next year. I am ok at staying at that school where I make no money. But now she has no roommate and $1800 month of rent. I say Karin I know you can do this you are a smart girl. Y0ou graduated Magna Cum Laude from LMU. You are a great teacher but I am starting to realize too that she has not put in the effort to make her marketable in the USA. She has to want this too and do her part so that God can open doors for her.

    I love you Sarah. Thank you for letting me ramble off on a tangent. Yes I am going to start to write while is gone in Africa. Mostly for me but also for her.

    Love, Maria

    Like

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