This handsome young man is our son, Jonah. We named him after our favorite prophet. As you can see, he is on a wheelchair and has a trach. He was born with a rare disease called Myotubular Myopathy. It effects the muscles. He is perfect, only weak. He needs help breathing and he eats with a g-tube. We are honored that God gave him to us. He obviously is our pride and joy.
In this post I want to honor my mother, she is wonderful. Not only did she give me a kidney a few years ago, she has been instrumental in helping us care for Jonah. I would like to share with you all, a poem I wrote for her.
"I...want...flowers", he signs, while we are on our way home from the hospital.
He presses his small fingers to his nose,
Wrist red and swollen from the three blood tests,
And pretends to smell imaginary Buttercups.
He inhales them tiredly,
Drained from the bloodletting,
The turnicate,
The second stick of the needle after the collapse of the first vein.
At the hospital my mother and I watched helplessly.
It is a chore to extract his blood.
It turns and twists within small tunnels.
The needle searches as if for a rare nectar,
As if he were a flower and the syringe the tongue of a butterfly.
That would be fine,
Except this one stings as it drinks him.
He sat still as they pricked his hands.
I remembered how he looked up at my mother,
Face turned to a frown, a wince, and then the quiet gasp
As they pulled out the stopper
Slowly bleeding him into the plastic vial.
Now exhausted,
He sits in his wheelchair, strapped to the van his grandmother drives.
He asks her for flowers...
And my mother stops.
Stops as if the world depended upon it,
Stops as if it would somehow save his life.
She pulls over to the side of the road,
And in her dress
Bends down properly...only because it is proper to bend while picking flowers...
And hands him three Black-eyed Susans.
And I saw for the first time that day,
His face opening up towards my mother...
As if she were the sun, and he a Lily of the Valley.
