Truth - a NICU memorial September 14 2014, 2 Comments

In church today our Pastor highlighted the song "This Little Light of Mine" in an illustration. We love that song! It prompted me to go ahead and share the following.  I spoke at Nationwide Children's Hospital NICU memorial service this August.  Some may have seen the video Justin posted, but in light of all the reflection I've done this weekend, I thought it was fitting to post the written form.  This was directed to fellow nicu parents.

My baby boy, Bryer, was born October 17, 2012 and left us for heaven on September 12, 2013 at 10 months 27 days old.  He had the most beautiful, thick, wavy hair, a dimple in each cheek, bright blue eyes with the longest eyelashes. And by the time it was all said and done, he had grown one perfect tooth.  He spent 205 of his 333 days at Nationwide Children's Hospital, the first 5.5 months of his life were in the nicu. He had a constellation of issues, but never a diagnoses or trajectory of where we were headed, until his last admission. This is when the seizures began, and they proved to be too much.  A brain MRI revealed swift and devastating deterioration.  He died peacefully in my arms 2 days later.  


As I look at all of you, I see wounded mommies and daddies just like me.  Scars earned with each swipe of the access card allowing visitation into the nicu. More each night we left behind our sweet one, the most unnatural of things.  Toiling for grams of weight gain, only to have lost them. A sock to the stomach each time we took a step in the wrong direction or got further and further away from normal. Perhaps you've felt completely beat down by morning rounds.  Or sat through devastating consult after devastating consult. The blows kept coming didn't they?  

And then finally, the crushing weight of death.  We have all felt it.  

We have all made the unthinkable walk out of Nationwide Children's Hospital with arms that were empty.  We have all lost our baby.  We found and still find ourselves in a place we would have never fathomed, experiencing things we didn't even know existed.  Sadly, this is an earthly truth we carry.  Sometimes, don't you just want to tell somebody?  Help them understand? Tell them about your baby and how fiercely they were and still are loved?  Grief can feel pretty lonely at times, don't you agree? But look around, we all understand, and I feel privileged…strengthened to be with you today ...remembering and honoring the valuable and precious lives of our babies.

My days spent at Nationwide were long...Anywhere from 8-12 hrs or days on end. On any given one, I battled exhaustion, discouragement, anxiety, debilitating stress, anger, loneliness, fear, envy, guilt and homesickness. Can you relate? It was a battle in the truest sense of the word.  Typically, I could overcome and press on.  I listened to the same songs - my anthems - on the drive in.  I armed myself with God's truths, promises and scripture, reciting them over and over during that long walk from the garage.  I prayed  A LOT.   But even still, sometimes I felt utterly defeated.  It was one of those days in early March before our April homecoming from the nicu.  We had been moved to Bed 6, the corner "suite" of the old J4 unit.  It had a coveted window and only one neighbor.  It was more spacious and quiet.  We welcomed the natural sunlight.  I was sitting in one of those oversized rocking chairs, my back facing the rest of the nicu.  

Bryer, awake, was snuggled into the crux of my arm.  I was rocking and patting his bottom while singing, "This little light of mine, I'm gonna let it shine...let it shine, let it shine, let it shine..". Unexpectedly, I heard a voice join in from behind.  I kept singing, just a touch louder, and so did she.  Soon, she came around the chair and into view.  It was sweet Billie from environmental services.  She was making her rounds mopping each bed spot.  We kept singing; I rocked and she mopped.  By the time she made it around to the other side of the crib, we had finished the verse.  I stopped, but she started up again, "Jesus gave it to me, I'm gonna let it shine, Jesus gave it to me, I'm gonna let it shine". This time, I joined her, and we sang it through, a little louder still.  I couldn't see who or what was happening behind me, and I still wonder if our mini-revival was heard by anyone else.  When the verse ended, she was right beside me, our eyes meeting for the first time.  She bent towards me and placed her hand on my shoulder.  Looking me in the eyes, she said, "You keep walking by faith… not by sight". And with that, she smiled softly, and was on to the next bed.  

I sat there, completely still.  I knew this had been a devine appointment...this moment.  It was so simple, yet layered with meaning.  So powerful, yet completely sweet and tender... our voices testifying (rather loudly even) to the light He had gifted Bryer upon well as to ALL the little lights nearby.  It's a treasure I keep tucked close and think about often.

Furthermore, He used Billie to speak truth into my heart.

Jesus was reminding me, "You are not forgotten, Carey. That Hope that keeps you going, it's more than just optimism...I AM your Hope. In the face of this suffering and uncertainty, keep your sights set on me and My promise of everlasting life, not on your circumstance in this world."   

The promise of everlasting life.  Yes.  This is THE ETERNAL truth that will trump all earthly truths. Even the earthly truth that we all share and has brought us together today. Yes, I carry this earthly truth of Bryer's death, But the eternal truth is that Christ has conquered death …Bryer's…Yours...Mine…anyone who believes and accepts Him as Lord... and we will live together in eternal glory.  

This life is not it.  

I assure you there's more.  

This road that we are on, if traveled with Christ, is ultimately a highway to HEAVEN.  When I consider this radiant destination, even in the depth of my grief, I have hope... and Hope will lead me on.  

So, my prayer for us all is this:

Romans 15:13 May the God of hope fill us with all joy and peace in believing, so that by the power of the Holy Spirit we may abound in hope.