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.

Short term missions and orphanages- there's a problem here

Part of the biggest struggles we have with two of our children comes as a result of institutionalization and well-meaning strangers.  These strangers were mostly there as “missionaries.”  They were there on short term mission projects, set on “investing” in a day or week of the life of an orphan.  Set on seeing children’s faces light up with joy at the candies they bring.  Snuggling children in a way that parents and close family do.  Strangers coming into these children’s lives for just a short time, hugging them close against their bodies and  encouraging the children to give indiscriminate affection over the course of a few days only to disappear one day and never look back.  

Your pictures and your memories aren’t what the mission trip is supposed to be about.

Please, if you’re considering mission trips either as a leader, a student, or someone with influence on how these short term trips are done, PLEASE consider the long term effects of indiscriminate affection and what it does to children who have been repeatedly hurt, abandoned, and whose brains are forming in a way that they will not form bonds with familiar people.  Please don’t hug and kiss on children you don’t know, and whose future you don’t have in mind.  Please don’t dismiss the ‘rules’ of their environment and allow chaos to break out in the ‘name’ of a week of spiritual breakthroughs for yourself.

If you need to feel good about helping orphans, consider that their buildings need to be painted, their playground updated, their toys refreshed or replaced.  You can bring music and dance the day away or bring Bible lessons to teach, but where YOU need to hug and kiss on them and hold them and show them affection because YOU believe that YOU are the only one that is bringing the name of Jesus to them and in order for YOU to do this, YOU must show them affection, THEY are not going to benefit from it.  No, they’re actually being destroyed.  

Teaching an institutionalized child in an orphanage that strangers are the ones who give affection, even in the “name of Jesus” is debilitating for them while they grow up.  They learn that those they opened up to left, just like every other important person in their lives that landed them in an orphanage to start with.  They may even associate your desertion with the desertion of the Jesus and God you wanted to teach them about.

Instead of fulfilling your need to love on orphans by being physical with them, show them love by appropriate interaction of a friend or even stranger.  High 5’s, side hugs, sitting face out on your lap, reading them stories, singing songs and dancing holding hands.

When you show appropriate social boundaries to children in an orphanage, you might be saving them from heartbreak and you may be making their ‘connections’ between intimacy and social boundaries grow in a way that will make their actual BRAIN CONNECTIONS form in a healthy way.  Where they don’t feel your leaving as a loss, but as a stranger that came through their lives as they really should.  A stranger that told them about a Father God and his Son named Jesus.  That’s what we want them to remember…
The fine print...*This is not talking about long term missions or local missionaries, and another way to help orphans without causing some of these issues is to support those who live by the orphanages and are bringing the Gospel into the orphanages on a regular basis and have relationships with the children! **The result of brain connections being made in a way that doesn't allow a person to form strong bonds with familiar people are two conditions which used to both together be called Reactive Attachment Disorder. Now they've split the condition into two types and Disinhibited Social Engagement Disorder is what we see with our institutionalized children. You can read more about them in very easy-to-understand language here: https://church4everychild.org/2013/06/18/disinhibited-social-engagement-disorder/