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