Tuesday, May 30, 2017

The day nothing changed

Today is a day that nothing changed.  Sure, there were subtleties to the day that made it different from the one before, and the nuances of life’s movement were there.  But today, nothing changed.
I have to remind myself of that, because today, something inside of my mind changed.  

Today, a doctor wrote on her note pad “She has a diagnosis of cerebral palsy.”

It’s a simple little sentence.  Six words.  They didn’t change my life nor the life of my daughter, but in my mind, something shifted.

My daughter was born early and as a result of that and some other medical complexities, she had a brain bleed at birth.  When my husband and I were first introduced to her at 4.5 months old as we considered pursuing her adoption, this was explained to us. “She will one day be diagnosed with CP” the notes said.  She had post-hemmorragic hydrocephalus, and had really rough first months of life.  Even now as I write this she’s in the nursery hooked up to a ventilator and oxygen concentrator that helps her breathe through her tracheostomy tube, inserted right into her throat.  She’s eating through a feeding tube.  

She’s had a long road to get to our home, and still has many struggles in life to overcome.  Even though we KNEW that this day was coming and we would hear a neurologist say the words “cerebral palsy” to us, it still shook me a little.

“She seems so happy.”  “Are you SURE?”  “Doctors can be wrong sometimes.”  “Just wait and see what God does, he’s going to heal her brain!”  “But she looks so… normal.”

I’ve heard all of those statements in the last 4.5 months since we said “yes” and moved mountains to join our baby girl in a hospital several hours from our home.  Most were said in a loving tone, a hopeful tone, a tone that wanted us to agree with them and believe that they were right.

The thing is, nothing changed today.  She’s still “so happy.”  She’s still able to be healed.  She still looks “so… normal.”  And yet, we have a diagnosis that says there’s brain damage to an extent that it has caused neurological deficit in motor areas of the brain, and she will need assistance to meet whatever milestones she may meet in the future.

This isn’t a ‘sentence’ with the diagnosis. God is still good, even when things are hard, and His will is still what we seek.  It reminds me of Jesus’ response about a blind man when he said “He was born blind so that the works of God could be seen in his life.”  I cling to that story as if Jesus was speaking directly to us some days.  Six of our children have Down syndrome.  Now two have a primary diagnosis of cerebral palsy.

I had a little conversation with Jesus today. He did the talking to me, because I could only listen. It's as if he was saying

“Him, and her, and him, and him, and her, and her, and her, and him… I see them all.  I know their struggles.  Some of their struggles are because of the environment that man put them in to.  But my Father will make all things work together for the good of the Kingdom.  God is going to be seen THROUGH that thing which the world sees as a deficit.  Some of them, the very making of their chromosomes has been crafted to be different, so that a different part of God could be seen.  Each and every person has strengths and weaknesses, areas that the Father has given more or less to each so that they can be a part of the Body of Christ.  No matter what strengths and weaknesses are more evident to others, my Father has given each person a gift that they will use to Glorify Him.  Their praises are heard, whether in eloquent and flawless music or in grunts and utterances of joy.  Every person has purpose, has meaning.  Every person is here to fulfill a role in The Church.  Don’t discount anyone based on what you can physically see.  My Father created them WHOLE.  Each was created so that the works of God could be seen in their lives.”  

I’m reminded that God’s plan is intact.  Our daughter didn’t change today.  Today, our daughter received a diagnosis, but through the eyes of God, today was a day that nothing changed.

1 comment:

  1. Thank you for sharing your journey, Meredith. Love you and each one of your beautiful unique children!