Another New Normal...for now.

Michael came home Friday at 3:30pm.  The boys and I drove in to visit that day, just like the previous two days, but this time with an idea that we may be driving home with a car full!  He healed and progressed so rapidly that week in the hospital, not without the expected speed bumps, like infection and fever and not eating well orally, but with speedy progression nonetheless.  

Two hours after we pulled in the driveway, I pulled back out to head to the Collyde Conference in New Jersey.  I intended to keep my commitment to play at the conference in the event Michael was stable, even if still at the Hospital.  With him being stable enough to come home, I packed my guitar and backpack, thanking God for His gift of my being able to stay home with Daniel and Nicky all week, so they could sleep in their beds and always have a parent with them, and I drove to the airport: one of the more difficult times leaving.  No one said everything in life was easy.  :)  God certainly spoke to me at the conference through the teaching of Gabe Lyons, whose son also has DS.  What a brilliant and culturally relative believer in Jesus.  Hopefully God used me to speak love and truth to the conference goers through my words and music too.  I'm so thankful for how those people uplifted me and my family in prayer all week.  

I made it home that night and enjoyed a day of rest yesterday with my recovering family: all five of us together again!  Michael continues to heal, we have to be very careful with him of course, so we pray that our loving, often over-zealous boys don't pounce on Michael's little damaged bird chest out of love.  But it's good to be home.  :)  

Thanks to my home church, Crestmont Alliance, for all the meals, love and prayers in this past week!  

Michael Surgery Update 2

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Michael Surgery Update 1

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Thoughts From My Wife

Michael and Sarah pre-op

My wife, Sarah, journaled some of her thoughts very early this morning, and with her permission, I would love for you to read it if you choose:

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"You know that feeling, that moment, when your brain enters consciousness in the morning, but you haven’t yet opened your eyes and you can just about tell what time it is based on how you feel?  You feel the stiffness from lying in one position for so long and there’s something about the temperature of the room and the weight of the blankets that make you seriously consider allowing your brain to drift back into oblivion.  Sometimes we succumb to that blissfulness, but other times our minds start to engage in what our day is going to look like, where we’ll go, who we’ll see, the ‘to-dos’ that have to get done because they were transferred over to today from yesterday’s list, you know what I’m saying.  

"There was a morning a short time ago that is forever etched in my mind.  There was that moment when I became aware that it was morning, but everything felt a little off and I didn’t have the capacity just yet to open my eyes.  I was trying to get my bearings and recall where I was because I felt different, I was cold and uncomfortable and I remember thinking in those seconds that my eyes and my head hurt and I didn’t know why.  And then it happened.  I remembered.  I remembered all of it.  And before I even opened my eyes to greet the day, a heavy tear fell down the side of my face and dripped into my ear; it was January 14th and I realized that the day before really did happened.  I gave birth to a son with an extra chromosome, who was considered mentally retarded, who had a heart that was terribly compromised and who was in the NICU fighting an infection that had already ravaged his little 5 pound body.  It was still very early and I was trying to be quiet, but I couldn’t stop tears from falling.  I rolled over on my side away from Aaron, who was sleeping in the chair next to my bed, and pulled my blanket up under my chin and cried.  I still hadn’t opened my eyes yet and I didn’t want to.  I just kept pleading with Jesus.  I felt the warmth of Aaron’s hand on my left arm and it calmed me.

"That was four months ago today.  I’m in a different place now than I was.  I was overwhelmed by fear, feeling trapped in the unknown and uncertainty of what was to come.  Grieving the lost dreams and the loss of the baby I thought I was carrying.  While there are still unknown chapters ahead of us, I am not afraid.  I feel honored that God would give Michael to us and I am truly excited to see how He will continue to shine through our boy.  Today we will take him to the hospital and I will lay him down on the table where they will create in him a new heart.  I can’t help but think about Abraham and how he must have felt laying his boy down before the Lord.  When God asked Abraham to sacrifice his son, Isaac, I can only imagine the initial thoughts of confusion and anguish because God promised Abraham that his lineage would be blessed through Isaac.  Well, how will that work if Abraham has to sacrifice him, his only son?  Abraham trusted God.  He knew God had a plan.  He said to the servants traveling with himself and the boy, “We will worship and then we will come back to you.” (Gen 22:5)  Abraham didn’t know the future, but He knew God’s promises wouldn’t return void.  He knew that God would make a way for him.

And God did.  

"I fully, completely and wholeheartedly trust God.  I believe He is good.  I believe He has a plan that is perfect and I desire His plan more than my own that is tainted with flesh and sin and selfishness.  I have such a peace about what is to come, and that’s not to say I have peace because I believe Michael will survive this and thrive, but because the God who had Michael in mind when he laid the foundations and corners of our infinite galaxies has a plan.   And whatever that plan looks like, in death and in life, it is good.  It is perfect.  Albeit hard for us to wrap our heads and hearts around, it is still absolutely perfect."

-Sarah Shust     

Michael Surgery Eve

My boy. 

It's Mother's Day morning and the last day of the Called To Love Tour.  I'm sitting on the bus on a rainy day outside of Dayton, Ohio.  I just had a special Mother's Day breakfast with Downhere's own Glenn Lavender at the Bob Evens and now I'm waiting to be taken to the airport to pick up my rental car so I can start driving home as the strands of music from the last chord of my set are still ringing in the air.  

Michael's surgery is tomorrow morning.  I'll get a couple hours of sleep after kissing Daniel and Nicky hello and goodnight in their beds, we'll drop them off at the neighbor's before sunrise and head down to Pittsburgh.  Michael has had a very hard time breathing in the last week, as expected with his heart straining harder and harder to oxygenate.  So this surgery couldn't be a day sooner.  

Contrary to rumor, Michael is not having a transplant.  His Complete AV Septal Defect demands Gore-Tex walls to be inserted that should stretch and grow for the rest of his life with valves inserted too.  His heart doesn't work properly right now, Lord willing tomorrow it will, whether God creates flesh before the doctors get to it, or Michael will be part Gore-Tex for the rest of this life. :)

Because of his age and weight and the nature of the surgery, this is a high risk procedure.  I appreciate your concern and your prayers for the doctors and all involved!  We trust in God's unfailing love.  We trust in His sovereignty.  We pray earnestly for a successful surgery and a quick recovery.  

I will wait on You

You are my refuge

Why and Whom I Leave.

April 12 - 24, 2012

I'm sitting in the Atlanta airport watching planes come and go making our big world small.  I'm a month and a half into this tour season and the farewells to the family are becoming more commonplace, therefore the boys aren't crying as much, therefore I don't cry as much.  I held my 3 year old Nicky last night at midnight after I'd taken him to the bathroom one last time, he hung mostly-asleep on my shoulder as I rocked him and sang to him.  As I did, I looked at the big map of the United States on the wall of my boys' dark, quiet room.  And it struck me, the privilege I have to take Hope to the people of this one country.  In a big world, I get to bounce around these 50 states and sing praises to Jesus with you, sharing with you what our Lord is actively doing in our hearts with hopes to encourage you.  If I must leave my wife and boys for a season, what more noble purpose is there?  That's rhetorical.  I love getting to share my time away with you all.  

Easter. I told Michael the tomb was empty.

Michael is still on medication to strengthen his little body as long as possible.  He's currently 7.5 pounds.   He's desaturated a couple times, where his hands and feet will turn bluish-grey...one time his whole body did, as he struggles to oxygenate his blood.  We quickly reposition him, encouraging him back to deeper breaths.  It can be scary to be sure.  We're praying for healing.  My friend Larry Smith says that if you're going to pray, "Pray big."  Elijah was a man just like and us and he prayed a dead boy back to life, fire from heaven and rain back to a parched land.  Big prayers.  I'm praying for a brand new heart before surgery is even needed.  But I'm completely good with whatever God wills.  His ways are higher! 

God is teaching us so much about what is important, what is worth dreaming about, what is good. What it really means to be blessed.  More about how we are infinitely loved by an All Powerful Father who doesn't need us, but knows we need Him.  

Hope to see you out there.  Maybe we'll get to talk about some of this.  

Don't forget to ask your radio station to play Risen Today :) His resurrection is worth singing about more than just on Easter Sunday morning!  Thanks!

Called To Love

Poster for Risen Today
Available at Concerts!

I'm sitting at the Madison (aka Radison) Wisconsin Airport with Glenn Lavendar (G.Lav) from Downhere getting ready to fly to our respective homes to be reunited with our respective families.  The first two weeks of the Spring leg of the Called To Love Tour is over and I couldn't feel better about how the evenings have been going.  Every night has been packed if not sold out in advance, people standing in the aisles, singing, shouting, laughing, crying, praising, worshiping. If you're on the fence about coming to a show near (or far) from you, please join us, people tell me it was a good decision to come and we'd love to meet you!  We've been doing a Q&A for the "Artist Circle" ticket purchasers before the show and it's been a great time of banter between Jason Gray, Downhere and myself and we're able to spend more time than we do in concert to go deep about what God is doing in our lives and what He's teaching us.  Plus you get to sit in the front row if you choose.  

10 week old Michael when I was picked up at airport

Michael is on some medication to help desaturate his lungs, they were a little...saturated with blood, making it difficult to breathe, therefore difficult to eat.  He's breathing and eating better now, which will help him gain that necessary weight before open heart surgery.  No word yet on when that imminent procedure will take place.  I suspect within the month.  He has remained healthy, which is vitally important to ensure his ability to have the surgery when he needs it.  Sarah and boys are holding the fort at home, but they certainly miss our community; we haven't gone to church, Sunday School, Kids Clubs or Daniel's weekly homeschool meetings since January.  Sarah did sneak the family into two local CTL shows to see me, but we kept Michael tucked away in the back away from people.  It was so good for me to see my family during such a long stretch of two weeks away and I think it may have been good for them to see daddy.  :)  "Uncle" Duffy made jump ropes for Daniel, Nicky...and me.  Yeah, I said he Made them.  Little known fact on Duffy, in high school, he was ranked 18 in the nation for...most...awesome...jumproper...

Writing with Mia Fieldes

In between our two weekends of shows in DC, Kentucky, PA, Jersey, Ohio and Wisconsin, I wrote 3 songs in Nashville with Ed Cash and Mia Fieldes for the new album that I'll be recording with my band in August for a release next April (2013).  Pretty excited about the songs that are being unearthed and pray there are many more to come!  

Interesting story happened yesterday at home, while I was in Madison, WI.  My two older boys (5 and 3) went to play with the girls next door outside in the afternoon.  They're not allowed to touch so they don't pass any germs (again to keep Michael healthy for surgery), so they just run in circles and laugh.  Sarah was inside and saw Daniel run to our backyard and hide under the swing set.  She assumed it was hide and seek at first but soon realized something was amiss.  She called him in and questioned him and he denied there was anything wrong.  She called me and I encouraged further questioning; he could return to playing after the truth was given.  It turns out that he was accurately blamed for encouraging the 3 year old girl down their slide where she landed in mud.  When the neighbor mom asked Daniel if that was true he denied it and got scared because now he 1.) encouraged someone to get muddy and 2.) lied about it.  That's why he ran home and hid.  

Before Sarah had called him back in for further questioning, the kids were tossing little rocks and one in Daniel's hand bounced off the neighbor's window; no damage, but loud.  The mom came back out asking what was going on and saying reminding that we don't throw rocks. Now Daniel has 3 strikes and is afraid. If you know my meek little boy at all, you know he was devastated.  

The story ended well, honesty was spilled, Sarah assured him that no one was angry with him and our neighbor assured him of the same very sweetly when Daniel and Sarah walked over to apologize.  Sarah exasperatedly asked me, "What can we do to convince Daniel that we are safe and he can tell us anything!"  I responded that we simply continue to respond lovingly and safely so the next time he thinks about hiding, he'll know his parents love him and are safe.

Then I realized that it's also human nature not to trust and to tend to hide.  Adam and Eve hid in the garden when they disobeyed for the first time, and think about this: God gave them no reason to not trust Him! God is perfectly loving, perfectly trust worthy, they had Zero reason to doubt Him...and still they hid.  

Why do we hide from the safest place we can go whenever we stray from His wisdom.  

God help us run to Your safe and loving arms!