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