Bain’s Story: Abstract Masterpiece

We finally received answers for Bain’s issues! ( If you haven’t followed Bain’s journey, you can click here) They may not be answers we wanted to hear, but with those answers came with a game plan. A path. A direction for what has been an aimless journey.

At one of Bain’s check-ups the doctor said he was referring Bain to a behavior and developement specialist. Bain had quit talking, quit responding, and wanted nothing to do with other children. At first, I just thought he was tired. We were still looking at muscle diseases and waiting on his muscle biopsy. Then, thankfully, his muscle biopsy came back free from signs of disease. I knew in my gut that something was still wrong. So, I agreed to the assessment for a behavior/developement issue.

An Autism diagnosis had become a real possibility to me as I looked more into the disorder. He meets most of the markers. The regression was the biggest sign for me. So when the assessment was over I decided to prepare myself for the results. I started learning more. I started talking to family and friends about it. I was sure I was prepared to hear the words that explained my son’s lack of words.

“We concluded your son has Autism Spectrum Disorder.”

I was not prepared. As I looked this woman in her eyes, my own swelled up with tears. My heart shattered. The room felt like it had turned into a row boat in an angry ocean. Words were still leaving her mouth, but the breath I needed, I couldn’t find. I had to ask for a moment, call on the Comforter, and felt that presence again. The presence of something greater than myself, calming me and getting me back in the mindset most helpful to my son. I cannot emphasize how important the Holy Spirit has become to me.

“He also had Global Development Delay.”

“What’s that,” I asked. I was informed that my 20 month son’s motor skills are at 14 months, his receptive language at 7 months, and his expressive language at 8 months. I don’t even know what this means for my son’s future. Will he develop eventually? I have no idea, but I will do my best to learn. To advocate. To fight for him.

So, Bain’s journey has been one without an end game or plan. Now we have that. My son is beautiful, happy, loving, and gives the best kisses ( when he’s not biting my face off lol). God made him just perfectly, how God sees fit. My son is an image bearer, bearing the image of Perfect Love. I do believe I’ll write more about what that means to me,soon. Bain deserves a fighting chance, parents willing to everything in their power to help him, and love and dignity. I intend on making sure of it.

There is this song that has ministered to me. Some of the lines have become mantras and breath prayers. I’d love to share it. I am pretty sure I have shared it before, but it’s never meant so much to me as it does now.

 

Yeah, maybe words don’t say much
Maybe we don’t need words to communicate our love
Maybe
All I wanted a perfect life
Some perfect kids and a perfect wife
Some perfect days and some perfect nights
Even though I’m flawed, I should be alright
A child with special needs didn’t fit in my plans
I’m a needy man, wanting more that what you put in his hands
All I wanted was a perfect family core
Now I’m envying the family next door
Trying not to trust therapy more than God
I am walking the street where fear and love collide
I am learning in weakness, you still gotta serve
And my connection with my boys is way deeper than words
But damn, words, I thrive with ’em
Words are my life, my career, I survive with ’em
I’m given a life sentence that words can’t fix
Now we both live in a world that don’t make sense
Yeah maybe words don’t say much
Maybe we don’t need words to communicate our love
My sons are not a punishment or an accident
Just a little abstract masterpiece of what the master did
I try not to doubt the power of prayer
But sometimes, I just feel like the power ain’t there
Some days I’m feeling good, some days I’m feeling torn
I’m getting praise for activities a father should perform
I get applause when I excel, thank you
Is there grace for me when I fail and I’m feeling shameful
Yeah, well maybe words don’t say much
Maybe we don’t need words to communicate our love
My father said he needed greater trust in the Lord
And the Lord used cancer so he could trust in Him more
He died without complaining, that’s when I understood
He taught me more in his silence, that a sermon ever could
Words can be lies to help us disguise our phoniness
Feeling insecure, in the midst of pride and loneliness
I learned the meaning of contentment really fast
Wanting change, while appreciating everything that you have
Yeah maybe words don’t say much
Maybe we don’t need words to communicate our love
Maybe words don’t say much
Maybe I should just learn to shut up
Only you know
Only you know
Oh oh oh
Only you know
Only you know
Oh oh oh
Truth is your presence speaks much louder than when a choir sings
I never knew I’ll find joy up in the smallest things
The Counselor said “Live long, love strong, stick together”
This is a thorny rose you two will carry forever
Find value in your interactions, and not in your treasure
Find strength in Jesus, increase your faith in good measure
Avoid evil, your kids need a home that is peaceful
Don’t be a passive man, understand that your family needs you
Pray for healing, hoping they find a cause
But after all, I resolved, you are not a problem to solve
Maybe I wouldn’t change you
Maybe I’m just unable to see your potential
Because I’m blinded by the labels
Yeah maybe words don’t say much
Maybe we don’t need words to communicate our love
Maybe words don’t say much
In that moment, we had a breakthrough
Silence, I want to thank you
In that moment, we had a breakthrough
Silence, I want to thank you

Sho Baraka Words, 2006

I was very angry at Autism. At God. At the world. At myself. I wanted to know why. There is a line from this song that helped me get past this stage. 

Pray for healing, hoping they find a cause
But after all, I resolved, you are not a problem to solve
Maybe I wouldn’t change you
Maybe I’m just unable to see your potential
Because I’m blinded by the labels

In closing, our journey is now in the light and with a direction. God, family, and friends are with us each step of the way. Hallelujah!

2 Comments »

  1. My heart breaks for you, but as I feel the pain, I am aware that you have been left with no illusions of control, while most of us, or at least many of us spend our entire lives trying to shore up that illusion that we are in control. In my best moments I know who is, in my weakest moments, I know who is. In-between, I think I am. May you be blessed with unbelievable presence as you seek guidance and strength from the one who made Bain and who loves him without qualification or expectation. May you find God’s presence in the journey when you least expect it and when you most need it.

    Liked by 2 people

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