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That inquisitive look.
I run into it nearly everywhere I go, often in the form of a lingering glance or questioning eyes. My baby needs oxygen, and is connected to an oxygen tank and pulse oximeter. We are admittedly a bit of a spectacle.
Some will speak up, and their words are an echo of what has been asked many times before: “What’s wrong with him?”
What’s wrong? A lot is wrong.
A lot of long, wrong words. Spina Bifida, myeloschisis myelomeningocele, hydrocephalus, neurogenic excretory systems, Arnold Chiari malformation, hypotonia, wrong, wrong, wrong.
All of thesewrongs have taken away the life I once hoped for my kids.
These wrongs have caused pain and suffering we never anticipated.
These wrongs have made a lot of hard.
My precious little boy has to live his whole life with challenges nobody would wish for. No breaks from it. No vacations. People staring. Strangers questioning.
It’s not fair.
It’s not easy.
It’s one of the last things on earth I wanted.
But life isn’t fair.
We aren’t promised easy.
“Hard life” has shattered our securities to pieces.
Raw and bleeding, we see clearly that there’s nothing in this mess of physical limitations to offer us comfort.
We can hope in the future, and manage the present the best we know how, but it could all fall apart in an instant.
The weight of permanent defects is heavy.
Just to keep his little body functioning is time-consuming toil that takes up much of each day.
All the wrong can be overwhelming.
But by staring “wrong” in the face, our lives have been made richer.
Each beaming smile, adorable reach, clumsy grasp – they are all special gifts.
We have seen good. God is creating good.
In darkness, the Light shines brighter.
The deepest valleys and darkest pits are not out of reach of God’s presence. “The darkness and the lights are both alike” to Him (Psalm 139:12).
We lament our losses, and our Comforter meets us there. Sharing in our sorrow, and understanding our pain.
As ashes of burnt dreams litter the ground, we realize those desires weren’t really that important in the first place.
Even in a life with so much wrong, God is weaving good.
Beauty emerges from pain. And eternity looks so glorious.
Each time I’m asked “what’s wrong?” I’m reminded how much is right.
He heals the brokenhearted and binds up their wounds. Psalm 147:3
Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and my burden is light. Matthew 11:28-30
Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change. James 1:17
The light shines in the darkness, and the darkness has not overcome it. John 1:5
Love you Sweet Sarah and all your babies? When I look I see nothing wrong with him. Just a sweet little boy created in the image of a wonderful maker. Love you all!
Thank you, Sarah, for staying strong and for staying sweet. Thank you for keeping your family nestled in the arms of God through your pain and pointing the world to Jesus. God’s Peace.
This is beautiful, uplifting and poetic! Thank you for sharing!