Saturday, December 22, 2012

My Dispersed Family.

How I miss my family being together, especially this time of year.  

Sarah remains with Michael at Children's Hospital as we wait for him to make necessary weight gains before we can dream of him being discharged.  He's only consuming about half of the ounces the doctors would like him to be consuming daily.  This morning the Feeding Team came in while Sarah was giving Michael his bottle and stayed with them for almost an hour, working with Michael to try every possible approach to get him to eat, but to no avail.  As discouraging as this sounds, it's encouraging to have a medical team witness his difficulty as opposed it just being hearsay.

We are praying for healing.  We pray that his aorta would not be pressed again his trachea and he would be able to breathe without the need for another major open chest surgery.  We are praying that his ears would be opened.  We are praying for a voracious appetite.  I have no problem with Doctors receiving glory due their works, but I would rather see God receive all of it. 

I am at home with my older two boys, Daniel having scored a fever of 102 last night, he is staying away from his baby brother and resting.  I'm leading worship tomorrow and Christmas Eve and therefore am so grateful for the help we have received from our church family as we navigate this difficult season.  Providing meals and watching my boys.  

This is certainly a different Christmas than we had anticipated, but we count our blessings. 

The Shust family appreciates your prayers.  For Michael's healing, Sarah's stamina and the hearts of two boys who miss their Mommy.

Through the storm He is Lord, Lord of all.   

Tuesday, December 18, 2012

Quasi Clinical Michael Update

 A silent moment in the PICU by sarahshust

Michael's surgery yesterday was intended to reveal quite a few things.  We needed to find out what was causing blockage in his airway, we anticipated it being adenoids, and it was: about 90% blockage.  They were able to remove the majority of the adenoids, leaving what is necessary to leave.

They needed to take biopsy samples from the stomach and small intestine which they were able to retrieve: results should take a couple weeks.  

They needed to remove fluid and wax build up against his eardrums.  His ear canals are so tiny that pediatric ENTs haven't been able to see down there with their tiny tools without Michael screaming in pain.  The plan was to install tubes in the drums unless the drums were too small, then they would simply cut into the drums to relieve pressure temporarily.  All the junk was removed but his drums are super duper small, no tube is small enough and even cutting the drum proved impossible.  He will need hearing aids to help be able to develop his speech…and to simply know what we sound like.  :)

They discovered that his aorta is pressing up against his trachea, quite possibly responsible for his labored breathing he's experienced since his open heart surgery in May.  We're in the process of figuring out when we can get that fixed with cardiology.  Another surgery obviously.  But a major issue.  

Somewhere near the end of this 90 minute procedure, the doctors were having trouble with his voice box surrounding his vocal chords being too small or too tight, so they intentionally nicked it so it would relax, a standard procedure, but because of Michael's hypotonia (laryngomalacia), his airway collapsed.  They had to rush him to the PICU to stabilize him.  He spent the night on oxygen and medicine to help him breathe.  This morning they began to ween him off of the O2 thankfully. 

Thank you all for your prayers and support as our family finds ourselves continuing to walk into the unknown.  

The One who holds tomorrow
Holds me in His hand
And I will not fear the future
I'll trust The Great I Am 
Who has been and always will be
Reigning on His Throne
For the One who holds me in His hand
Is the One who holds it all

(The One: From my upcoming album, written by Jonathan Smith, Benji Cowart and me)

Saturday, December 15, 2012

Recording with the Band

Nate, Coker, Duffy and me. 

Never in the recording of my 5 studio albums (5!) have I had such an enjoyable, spiritual experience than I had recording this new album.  

I've had people, friends, ask me beforehand "What makes this album different from other albums?"  I struggled in that moment and all I could come up with was what was so obvious to me, "I'll be recording this one with my band."  Which seems like such a minor variable.  But it was everything.  

I have spent the last decade of my music making life with Duffy playing bass with me.  He has done nothing but progress in his mastery of that instrument.  Sure, he can mimic something that has already been played, but he brings a style and technique to the table that no one else will.  

Nate Bedingfield has played electric guitar with me since the fall of 2009 and is the Music Director for the Attic: the High School Ministry at North Point Buckhead in Atlanta.  He's playing at church week after week and his sound just gets huger and huger.  It's a word. 

Brandon Coker came on board two years ago, bringing not only much need hilarity to the troop but a passion for unadulterated worship.  This guy is a beast on the drums (if you don't already know this, wait till you hear this record) and loves Jesus with all his heart.  He also just got married to Amanda who happens to be an outstanding photographer.  

Ed Cash you know because of his work on Chris Tomlin's albums, producing a sound that we all know and love.  His love of music that elevates the praises of God is incomparable and is evidenced in the instincts he has for where a song can and should go.  Plus he's a dear friend and so easy to get to know.  

On top of their credentials and skills, these are some of my dearest friends in this life.  I'd trust them with my children, and that's saying a lot.  I love them all dearly.

Put those components together in a room for a week with a bunch of great equipment and strong songs and brace yourself for a WEEK OF WORSHIPING!!!  I wasn't even needed to sing more than one take per song, just to provide a scratch track so they could follow along in the subsequent takes.  But I loved singing these songs so much that I recorded 8-10 vocal passes for each song if not more.  I never wanted to stop singing!  Frankly I'm going through withdrawal now.  

I cannot wait to start incorporating these songs live. 

Thank you for your prayers during this time, for us in the studio, and for my family back at home.  


Tuesday, December 11, 2012

Recording Day 2

Nate and Duffy rocking out at 100bpms
We just finished our second of two songs so far today.  The first is what I like to call a "Throne Room Song".  The kind of songs that can take you to the foot of the Throne room in Heaven like Revelation Song by Jennie Lee Riddle or Agnus Dei by Michael W Smith can do.  Or like my song Worthy on my Whispered and Shouted album hopefully does.  It was a worshipful experience starting the day playing that song.  I think it's beautiful and powerful sounding.  

After a short visit from Chick-Fil-A we ventured out into record a barn-burnin', fist pumpin', hoe-down of a song inspired by an old hymn that I wrote with Michael Farren.  I'm listening down to it right now while Duffy finishes up his walking Bass line which is beautifully all over the place. 

The sun is setting over Ed Cash's head. We're midway through a song that I wrote 2 days before Michael was born in the hospital whose words were my sanity through the unsettling first days of learning that our precious little boy had Down Syndrome and major heart defect.  It's a song proclaiming God's faithfulness that Paul Baloche helped me finish.  And right now it sounds fantastic. 

Having the guys I always play with help create the vibe of each song, contributing to parts and the song order and tones etc is a breath of fresh air, and an absolute blast.  

Monday, December 10, 2012

Recording Day One

photo by Amanda Coker
I'm actually sitting in the vocal booth right now as I type while Ed Cash and Brandon Coker are replacing the drum head that he just kicked a hole through.  Coker said never in his life has he punched a hole through a drum head and Ed said never in 10 years in this studio as he seen that happen.  No one will be able to accuse him of playing to gingerly on this record!
We have one song already done and and bunch of other songs charted out and we've played a few passes of a new song that Scott Cash wrote: you're going to love it.  I love working with these guys!


Sunday, December 9, 2012

Recording an Album!

Tomorrow morning...or more accurately in a few hours, I'll wake up and drive over to Ed Cash's studio and for the 5th time begin recording a collection of songs that I have the privilege of playing around the country and now around this globe.  The wonder of that is not remotely lost on me. 

These are songs that either came from my heart or songs that have touched my heart. 
These are songs that elevate our perception of God, as He could not be lifted any higher than He is already. 
These are songs that sing of His lovingkindness and His grace and speak to our great need of Him. 
These are songs that I get to record and perform with some of my dearest friends. 
These are songs that I cannot wait to hear you sing!

Thank you for your support!
Truly grateful,

Saturday, October 27, 2012

Catching up

My tweets have been my mini blogs.  But for those who are anti-twitter and facebook, I'll fill you in. 

It's been a blast being out with Big Daddy Weave so far this Fall.  We have a few more shows in Kansas, New York, West Virginia, North Carolina, Georgia and Florida before Thanksgiving.  God has been doing some amazing things on this tour, the Redeemed Tour.

Little Michael is already 9 months old and gaining weight finally, he was at 10 lbs 13 oz, yesterday, which we are happy with considering the open heart surgery and everything.  He is our little joy, smiling and singing.  Sarah brought him into a concert I did on acoustic at the Cove in Asheville and had to take him out because as soon as I started singing he would join in with Daddy.  Pretty funny. 

Nicky still has that G-tube in his belly and we're praying that the doctors will let us remove it soon as he hasn't needed to eat through it in close to 2 years now.  He'll be 4 in December.  He is our intense little warrior-leader.  

Daniel turned 6 this month, learned how to ride a bike this summer, can throw a spiral better than his Daddy and is taking piano lessons from his Nana in Georgia thanks to Skype.  

Sarah is doing amazingly keeping everyone well fed and healthy and clean and educated and falling in love with their Savior and I couldn't do what I do on the road if it weren't for her strength.  

The Band and I will be in the studio the second week of December and I'm excited about these new songs.  We have more than 10 'favorites' so I'm bracing myself to grieve some of them not making the record.  But I can't wait to start playing some of these new songs in the Spring!  Which, by the way, will be with Mark Schultz from March through May!  I've heard nothing but great things about that man and look forward to sharing the stage with him!  Hope to see you then, stay tuned for when and where. :)

Well, we've been closing every night by praying with concert goers who want prayer and now is that time!  God bless, brothers and sisters, walk with God. 

Wednesday, August 8, 2012

Worship in a Variety of Settings

I love the contrast I get to experience in worshiping God through song in various settings.  It keeps me on my toes.  

When I'm on the road with my band we can experience the exuberance of a crowd who has gathered at their annual [insert Unifying Entity] conference and we've been brought in to lead them in worship.  They jump in before the first note and we end up being the ones holding on for dear life as the crowd drags us to the Throne room.  

We lead worship sometimes to a crowd who has gathered for an "Aaron Shust" concert, they probably know most or some of the songs and came to participate in the experience into which I hoped to invite them to join. 

We lead worship on tour with other artists before an audience 66% of which didn't come to hear us, but still find themselves sitting through our set.

We lead worship at festivals with about 20 other artists (always great to catch up) where the stage next to yours is potentially louder than our own and the average temperature seems to be 100. 

We participate in worship at our home churches, where varying atmospheres of worship take place.  Some churches are "worship churches".  They love to sing long and loud.  Some not so much. 

This past Sunday at my small home church outside of Pittsburgh, PA, I took the stage with two of my good friends with whom I've played most consistently in the past 2 years.  Craig Schoeneweis on piano and vocals and Jim Skal on percussion, although he prefers the drums.  Our bass player Alex Grover was on vacation so we opted to not have drums without bass.  ;)   

We introduced Here For You (although I've been playing it while people walk in all summer long to sneak it into their heads) and while I was a bit nervous about the new song and regrettably more unfamiliar with the lyrics than I would have liked, I feel like it really worked: what a great way to start: WE WELCOME YOU WITH PRAISE!

Then we put as much soul as 3 white guys could squeeze into Alvin Slaughter's Holy Holy Holy.  Which I would say is a favorite at Crestmont Alliance.  I spoke for a moment about why we sing to God. I was recently asked, "Doesn't God know who He is?  Why do we keep telling Him over and over?"  I think we do it for two reasons (at least).  One is to remind ourselves of how great He is.  (That comparison between how great He is and how not-great we are makes His grace in our lives that much more beautiful.) The second is because He loves to hear His children sing songs to Him just like I love to hear my kids sing songs to me!  Even if they're silly, incomplete attempts to describe Him.  

We we sang My Savior My God (after a description of silly, incomplete songs, I felt comfortable playing one of my own) and ended the set with Because He Lives, inspired by David Crowder's take on the classic Gaither tune, but with a bit more volume.  Or as much volume as an acoustic guitar, piano and a djembe could create.  

Anyhow, it was one of my favorite worship sets, not many instruments on stage making noise...our insufficient sound system performing insufficiently, no subs, no lights except for all the chandeliers up in the house and our projector on its last leg, God was worshipped by a couple hundred hearty folks from Western PA.  

It sounded beautiful to me, and I think God may have found it beautiful too.  

Thursday, July 5, 2012

Creative Genius

Created and Beautiful

I'm currently watching Disney's Oceans with my Dad while he walks on our treadmill.  They highlight an amazingly gorgeous creature like the Spanish Dancer soon after they show a shot of the not so attractive stonefish.  My dad commented while watching the captivating Spanish Dancer, "It's amazing: God's creative genius, some creatures may not appear beautiful, but they're still a part of God's creative genius."

It reminded me of a conversation I had recently with a friend who wasn't to thrilled about their children's recent affinity for a certain type of music.  How can they even call that music?  

Whether it's fish or art or church worship styles or especially people...I think we could all afford to be a little slower to judge the quality of something/someone and ask God to help us view all of creation through His eyes.  

Monday, May 21, 2012

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!  

Monday, May 14, 2012

Michael Surgery Update 1

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:


"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     

Sunday, May 13, 2012

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

Thursday, April 12, 2012

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 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!

Monday, March 26, 2012

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!

Thursday, March 8, 2012

The Cove and Michael at 8 Weeks.

Daniel, Michael and one-sock Nicky
This evening is my last evening here in Asheville, NC leading worship at Billy Graham's Training Center for the Samaritan's Purse staff.  My band drove in on Monday from Nashville and Atlanta and we dusted off some great hymns like How Great Thou Art, Come Thou Fount, Great Is Thy Faithfulness, Jesus Paid It All, Holy Holy Holy and It Is Well With My Soul.  We also rocked some "old" favorites like Our God Reigns, Shout To The Lord, Because He Lives and You Are Holy (Prince Of Peace).  They were certainly fun to re-learn (or Learn!) how to play and I believe those songs from our collective past made it really easy to enter into worship, focusing on the words and their meaning.  We also played a few "Shustunes": My Savior My God, My Hope is In You, My Matchless...Matchless, Risen Today, of course you can't go wrong with a Chris Tomlin song or 5.  But I think my favorite moment was playing a new song that I wrote 2 days before Michael was born on January 13th of this year.  It was the first time introducing it with the band and I am so excited about how it sounds.  It went over really well I believe.  (At least I loved singing it!)  It's the only song I felt comfortable playing 3 times during the week.  :)

I also wrote a part of a song after I walked down to the beautiful Chapel that Ruth Graham designed.  I loved that so much too that we played it the next night.  This place is so restful and the Spirit just seems to be speaking so loudly, if you'll listen you can't help but hear Him.  What a legacy of God's work through the lives of Billy, Franklin and now Will Graham.  Men after God's own heart.  Will spoke most of the week and he was fantastic.  Opened up my eyes about I Samuel 1-3.  My favorite quote of the week was a Billy quote: "Everyone wants to stay on the mountain top, but the fruit is in the valleys!"

Tomorrow I fly home to see my family!  Michael has been slowing down when drinking his bottle, a indication that he is having more difficulty getting enough oxygen to his blood while he drinks.  So I'm guessing his open heart surgery could be this month.  There is a small window at the end of March and the beginning of April that I will be home, hopefully the surgery can take place then, otherwise, I will fly out of wherever I am on the Called To Love Tour to go home with my family for a time.  

Honestly, I'm asking the God of Wonders who healed Nicky's Eosinophilic Esophagitis with a bat of His eyelash to give my Michael a whole heart with 4 walls and 2 valves before surgery even happens.  God will accomplish His perfect plan regardless what I ask for, but sometimes we have not because we ask not.  

Sorry for the month off the blog.  I was soaking up family time, can ya blame me? ;) 
Thanks for caring. 

Thursday, February 2, 2012

Past the Due Date!

Jan 30th was Michael's Due Date.  How fun that we got him for an extra 2 1/2 weeks!  Michael is incredible.  Absolutely, stunningly beautiful.  He is peaceful, alert, strong, still draining his bottles dry (getting his daily required intake) and started sleeping through the night at 12 days old!  Sarah actually has to wake him for his morning bottle.  Dude likes to sleep.  

Michael's favorite Expression
We're still quasi-hibernating to do our best to stay healthy so that he doesn't catch anything from us.  Again, he'll have to have open heart surgery in the next couple months when his heart begins to fail he'll need to be healthy (Without the proper number of valves and walls, his blood is getting all mixed up, they'll do the procedure as late as possible so that his lungs grow to be as strong as possible.)  So anytime I leave the house, I shower when I come home.  Like Sunday after church.  I led worship in the morning and then at the church's annual report dinner/meeting I had the privilege of presenting my annual Worship report for the first time.  Anyhow, a lot of handshakes and hugs meant that I had to be ceremonially cleansed before I touched my little boy.  

Speaking of how incredible it is to be a part of a church body, our meals are taken care of from now until the end of March!  And seemingly every time one of Sarah's friends is at the grocery store, they call to see if we need anything.  My former pastor in Atlanta told us that church membership is like being a citizen of your country or a member of your family, it comes with responsibility and the right to be disciplined, but also comes with incredible benefits.  Right now we are reaping the benefit of community.  (I'm not saying that if we refused to be members, they'd refuse to take care of us but..."membership has its privileges" right?  My Dad has bailed me out of things before, picked me up when my bike had a flat, fixed my broken down car, loaned me money when I needed it...paid for college!  He doesn't do that for everyone, I assure you, he loves to care for me, because I'm family.  I also received discipline and instruction from him for years, because I'm family.  Same with church I think.  

Right now, we are receiving care and abundant blessing from our church family.  

Anyhow, that was an aside.  My back is feeling better.  Two adjustments two days in a row from awesome Doctor Large.  Let's see, my pelvis was out, my 3rd and 4th vertebrae were heading in two different directions and I had 2 ribs out of place.  And my knee's menisci had slid out of place...I was a mess.  When a doctor says, "Wow", you're a mess.  Time to get to know Dr Large a little better.   

Tuesday, January 24, 2012


It's pretty incredible being in the second full day home with 5 in the house!  Michael is doing great, on a wonderful schedule and up just one time in the night.  He's getting his rest and so is Mommy.  The boys are thrilled to have their Mommy and new little brother home and, quite frankly, so am I.  Forgive the lack of blogging the past two days.  The blog was very therapeutic for me during the past week and I will continue to blog about things in my life that move me, whether it pertains to Michael or any other members of my family, friends or Road experiences.  I don't feel led to start a "Down Syndrome Blog", although I'm sure I will reference some of the many resources you all brought to my attention.  Michael is now a part of our lives.  Down Syndrome is now a part of our lives but I don't think it will define us. 

We have an incredible support base through our church, very near and dear friends who help us through life, whether it's being there for Sarah when I'm on the road, helping us with Nicky and his health and allergy issues and I know they will continue to be there for us with Michael.  Pittsburgh seems to be a wonderful place to live when you have a child with DS and one of my dear friends in Christian Music is Jeremy Theissen, the drummer from Downhere, who I will be touring with again this Spring, has a 3 year old boy, Liam, with Down Syndrome.  We will have much to talk about.  

We're not worried.  We're not scared.  We have no reason to fear.  We have nothing but love and joy to experience through the lives of our three children.  

Thank you all for your generous offers of practical assistance to our family.  One day, and that day may never come, we may call in those favors! In the meanwhile, I pray you've found some encouragement from our recent journey, I know we couldn't have journeyed the way we did without our cyber-community loving us with the love of our Lord!

Thank you again so much!  

What's on our hearts: Michael's Complete AV Canal Septal Defect will require the heart surgery that so many of you know about.  If you don't know, sometime in the next few months, he'll have to have that surgery.  We won't know when until his heart fails.  We're praying for peace and wisdom. 

Friday, January 20, 2012

Michael Update 5 (O2 and Hearing!)

Daniel, Nicky and Levi: Play Day! 
Michael passed his hearing test today with a SMALL Nuk.
I dropped off Daniel and Nicky with their friends Levi and Jade around noon (thanks Joel and Chelsea!) and headed down to see Sarah and Michael.  The audiologists got him all patched up for his hearing test, which evidently you can sleep through when you're 8 days old.  He passed with flying colors.  We learned that people with DS often have Eustachian tubes that are horizontal and not angled and are therefore more prone to ear infections.  Daniel had a million and Nicky had time will tell.  His blood-oxygen level was much better too, so his pulse-ox monitor was removed from his foot, enabling Sarah to wrap him up a little better.  One less thing that he's plugged into.  And he's eating like a champ still.  Keep in mind, he's currently at 5lbs 2 oz...1 oz away from where he was at birth, but he was down to 4lb this is an improvement. 
Whatever, Dad. 
Our long time friends, Howard and Cherie (Papa Howie and Gramma Cherie to our boys) who lead our church's children's program came by to visit and brought a packet of cards that all the kids made Wednesday evening, welcoming Michael to our world.  They were adorable to read and pretty entertaining to see the personalities match the cards.  We had some good laughs. 

Sarah and I shared a quick meal from Panera, then I kissed half of my family goodbye and headed home for the other half.  I sat in Pittsburgh traffic, which I enjoy for some reason, and listened to K-LOVE, blessed by the words of friends and singing along with their songs.   Well, I listened driving up hills, I lose reception driving downhill when leaving the city because my motorized antenna is broken. :/
Nicky fell asleep on the drive home. Tired and at peace.
Tough times are inevitable.  Being surrounded by love in the meanwhile (especially love that is responding to God's love) makes all the difference.  I'm truly a blessed man. 

A Word From Max

I received a devotional book as a birthday gift from my parents during my first "official" tour.  Well, my first tour ever.  A twelve city tour with the amazing Nichole Nordeman in 2005.  The book was Mocha with Max, a collection of thoughts from Max Lucado and to this day it is one of the most focusing little books I frequent.  This morning I read an entry I'd read a thousand times before, but today it was different: 

"One of God's cures for a weak faith?  A good, healthy struggle.  Several years ago our family visited Colonial Williamsburg, a re-creation of eighteenth-century America in Williamsburg, Virginia.  If you ever visit there, pay special attention to the work of the silversmith. The craftsman places a ingot of silver on an anvil and pounds it with a sledgehammer.  Once the metal is flat enough for shaping, into the furnace it goes.  The worker alternately heats and pounds the metal until it takes the shape of a tool he can use. 
  Heating, pounding.
    Heating, pounding. 
      Deadlines, traffic.
        Arguments, disrespect.
          Loud sirens, silent phones.
            Heating, pounding. 
              Heating, pounding. 

Did you know that the smith in silversmith comes from the old English word smite?  Silversmiths are accomplished smiters.  So is God.  Once the worker is satisfied with the form of his tool, he begins to planish and pumice it.  Using smaller hammers and abrasive pads, he taps, rubs and decorates.  And no one stops him.  No one yanks the hammer out of his hand and says, "Go easy on that silver.  You've pounded enough!"  No, the craftsman buffets the metal until he is finished with it.  Some silversmiths, I'm told, keep polishing until they can see their face in the tool. When will God stop with you?  When He sees His reflection in you. "

Thank God for His timely words.  I want God to see His reflection when He looks at me.  

ps.  Michael ate like a champ again this morning.  :)

Thursday, January 19, 2012

Michael Aaron Update 4

Michael Aaron - 6 days old. 
Michael ate like a champion today.  He was required 35 milliliters per feeding and decided he'd consume 40 to show the hospital staff how it's done.  

Sarah continues to Blaze the Light of Jesus in Michael's little NICU room.  There is no doubt in my mind that God is using Michael's birth and his mother's journey in his first week of life to call more than one person to Himself.  Tears are shed and questions raised that lead to answers about our Sovereign God.  

Since Daniel and Nicky have been only slightly on the stuffy nose and coughing side of health, we've kept our distance from Michael the past few days and I've tried to spend as much time with the boys as possible.  We had another 'sleep over' in daddy's bed last night, and spent the majority of our snowy day in the basement with a fire going, playing Battleship, Wii and freeze tag in our pajamas.  I think it was therapeutic for the boys, I know it was for me.  

The past few nights, once the boys are bathed, in their PJs and in bed, we call Mommy, put her on speakerphone and say goodnight.  She prays over the boys, tonight each of the boys sang a song to her while I strummed, it's a sweet time.  One more thing that gives those boys a sense of security.  But I look forward to those moments not being over the phone.  I pray it's sooner rather than later.  I'm ready for my family to be together.  ...but that's just me being selfish. ;)

This just in: last feeding of the day: Michael consumed 45 mls!  Sarah said "This is a different kid from two days ago.  He's turned into a piggy!"  I thank you for your prayers that turned my boy into a piggy. 

Wednesday, January 18, 2012

Michael Aaron Update 3

Such a strange, beautiful but delicate place I find myself right now. I'm utterly overwhelmed and blessed by the encouragement and advice flowing in, and for those of you who mention that their comments may never reach my eyes, be assured, they all do, before I click the word publish. At that point they become public in order to bless others.

I know that Michael's story has become relatively more public than other birth stories, and I find that to be slightly disquieting. He is special, to be sure, but no more special than every other child that I've read about in your comments, any other child on the planet. We're deeply moved beyond words that radio stations are sharing our story and are asking you to pray. Yet I feel inclined to say that I don't believe that because of that attention, our Omnipotent God is necessarily more likely to act. That could mean prayers of people with a greater number of Twitter followers or Facebook likes would be more likely to experience answered prayer. I absolutely believe in the power of prayer, and I believe the mystery of the purpose of prayer may go deeper than we tend to give it credit. But, for those who disagree with that thinking, let me state that I am not asking you for prayer. I will tell you our story. It's up to you whether you pray, not pray...or unsubscribe. :)

We know from Scripture that the prayers of just one man can move the heart of God (Abraham interceding for Lot or Elijah praying it would rain) and I know that when I draw near to God, through prayer, He draws near to me. When I surrender to His will, my will becomes secondary. Prayer is beneficial to me in far more ways than just receiving affirmative answers.

So. Here's our story for the day:

Starting at 3am, my two oldest boys (5 and 3) walked down the hallway and crawled into bed with their daddy. We have always encouraged our children to sleep in their own beds. Exceptions are utterly marvelous. ;) In the morning, I got the boys ready for school, Classical Conversations, where Daniel, my 5 year old, gave his weekly presentation, this one on his family. Daniel took his place in front of the class.
"My name is Daniel, I have a brand new brother. His name is Michael Aaron Shust. He is 5 years old (he meant days) and weighs 5 pounds. He has Down Syndrome which means he will smile a lot, laugh a lot, share his toys very easily and give lots of hugs. It also means his heart is very sick and will need surgery to fix it. He is my brother and I love him and I can't wait for him to come home."

Then he passed around the picture of himself holding Michael, the one I posted yesterday, and asked if there were any questions. I was so proud!

Michael's Bilirubin is down. :) His cultures are good, but his weight is still low and he didn't eat very well today. But tonight at 8pm he ate his entire bottle, no need for the the feeding tube...that he completely yanked out for the 3rd time. Ouch. He's a feisty kid for having low tone. ;)

Sarah is still rocking the NICU. I asked her today how she was doing emotionally in the hospital non-stop. "Oh I'm fine," she dismissed. She was wired to handle this. Thank you, Jesus. I was not. Get this: a nurse cried in Michael's room this evening because of Sarah's "spirit". She said she couldn't imagine what Sarah was going through but she was handling it so well. Sarah said it was a totally open door to share the love and sovereignty of Jesus with her: "Worth more than a little extra sleep," she said. As I type, the nurse had just walked back in to hear more!

My friend Laura Story asks:
What IF the blessings come through raindrops?
What IF the healing comes through tears?
What IF a thousand sleepless nights are what it takes to know Your near?
What IF trials of this life are Your mercies in disguise?

You still wanna be blessed? :)

Tuesday, January 17, 2012

Michael Aaron Update 2

The Day: What a day. I held the fort at home. Successfully made oatmeal that the boys actually liked this time (just add more brown sugar, dads, you can't go wrong) and ate some amazing Chicken Parm that my neighbors brought over for lunch. I also enjoyed it as a midnight snack last night and plan on repeating that event tonight.

Daniel had some sniffles, so the boys didn't go downtown with me today, too precarious of a situation with Michael, so they played with friends and I headed to the Hospital with the primary purpose of moving Sarah's stuff out of the NICU sleeping room that she got "kicked out" of (I don't know why) and move everything across the street to a hotel that my amazing road manager Greg Anton Lee booked within about 3.5 minutes of my emailing him a plea for help. (No, that's not part of his job description. I owe him a box of Twinkies or something.) After I set up her room, I headed back to my friends' place who were watching my boys and they had dinner for us. Also phenomenal. Now the boys are bathed and tucked into bed after the evening serenade. (To which Nicky head banged and smashed his nose on the etch-a-scetch on his pillow.) Sarah called and informed me that the Hospital found a room for her and she and a dear friend moved everything back from the hotel to the hospital. And the hotel isn't going to charge us! That was a Quality move Inn my opinion.

Michael: His cultures are coming back clear from the sepsis: great news! He's not drinking the prescribed 35 mls per meal, so they're still pushing his feeds through his NG tube. Not as good. They won't send him home with a tube like Nicky did. His vitals seem to be strong, considering. No word yet on how soon he'd be coming home.

Sarah is strong and getting some more rest. She plans to sleep through the nights now and I'm quite happy about that. She plans to stay by her boy for as long as she is able. While I would love to have her here at home right now, and Michael too while we're stating the obvious, I admire and respect her desire to not leave her baby bird with a broken wing. She knows what she's talking about and she's Michael's biggest advocate there. My wife grew up with such an insatiable thirst to be a doctor, and though life led we think we know why she did. She knows stuff about the medical procedures that the average bear doesn't. And she often comes up with suggestions to consider that people in the room hadn't yet. No offense to them, she's just thinking about one case and one case only. (I'm referring mainly to Nicky last year) But she insists on sitting in on the Doctors morning pow-wow. I admire the mess out of that lady.

Me: I'm good. I'm probably spending too much time online and on the phone, but your comments are still breathing life into my bones. Some make me laugh out loud and shed tears at the same time. I can't wait for that little guy to come home and join the rest of his Shusts.

Despite the turmoil, the evidence of the Spirit is all around.
In the Love of the saints,
The Joy of the Lord,
The Peace that passes understanding,
Through Patience in the face of uncertainty,
Through Kindness from you,
In the Goodness of the food you cooked!
In the Gentleness of my boys as they hold and caress their baby brother.
In the self-control of my wife when the hits just keep on coming.

...or maybe that's Trust.

Resting in the arms of the One who won't let go.

Monday, January 16, 2012

Beautiful Aftershock

What an incredible past few days. Months of emotions were packed into hours. I wrote the last blog a little over 24 hours after our boy was born and we discovered that he probably had Down Syndrome. My emotions were true to where I was, where we were: raw. That was Saturday morning and now it's Monday night. 227 life-breathing comments on the blog later and a good many more on Twitter, Facebook and my website and Sarah and I are excited about this new adventure that God has plopped us in! :D The tears that we have cried have gone from shock and fear to utter awe at God's magnificent love evidenced through each and every one of you. It's like you conspired to make your stories all the same..."We found ourselves in the same situation, we were afraid, but that passes and your boy will be the biggest blessing you could never have lived without!" I swear half of you adopted more babies with DS after your first. And none of you corrected me for spelling Down Syndrome wrong each time I typed it! (I fixed it, don't check) which tells me that somehow, and I have a hunch how, Christ has rubbed off on you in a big way and you know how to show GRACE to people who are wrong and not as far along as you are. Bless you, Bless you, Bless you! Not for the grammatical oversight, for the general LOVE you showered us with. (See, one should never end a sentence with a preposition...Ms Byrne.)

Aaron and Sarah emotional update: We are good. By the grace of God we are good. Thank you for your prayers and stories and encouragements.

Michael update: Michael has been in the NICU since his birthday. He acquired a staph infection that led to sepsis (Medical people, please offer me the same grace my grammatical friends showed me) they couldn't pinpoint what it was until last night. But were giving him an antibiotic cocktail and eventually his white cell count began to lower and is still coming down: great news.
He was having a bit of trouble eating so they gave him a NG (Nasogastric: nose to stomach) feeding tube. (Nicky had an NG, NJ, GJ and currently has a G tube...they were comparing tubes tonight). His bilirubin is up, so he's under the blue lamp, and his temp is low, so he's in the tanning bed.

He is an absolute doll and I love him to death. Sarah is staying in the NICU around the clock, just like she did last year with Nicky. I picked up my 2 oldest boys last night and brought them home for some 'normalcy', but we'll make daily trips downtown until they come home. I sang and strummed them to sleep tonight. The all request set list was Rest In the Arms by Daddy. Little Nicky and Oh Mommy by Daddy, The Chain Gang by Sam Cooke and Give Me Your Eyes by good ole Brampo Neap.

If I had no Hope. If we had no trust in a Perfectly Loving God's Perfectly Loving Plan...I wonder how nuts I'd be right now. Our very lives rest in the palm of His hand. There is no need to fear.