Jonah is 10 years old and was born in San Antonio, Texas. We didn’t know what was wrong with him at birth, and thought it was the side effects of an epidural. But Jonah experienced breathing problems and eventually he was diagnosed as having myotubular myopathy. They told us he wouldn’t live past his first year, but they trached him and gave him a g-tube. He began to thrive. He could now eat and breathe. He has a sub-glottal blockage, so he can only breathe through his trach and he cannot speak, he is mute…but boy, can he use sign language 🙂 He talks more than I do! (He also makes clicking noises with his tongue.) I was trained by his nurses, and we soon learned to take care of Jonah’s needs.

Jonah’s mother Jennifer Darr has written a number of beautiful poems about her son, below.


I ….. Want …… Flowers

“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 tourniquet,
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 pull 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 Blacked-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.

Family stories from the Myotubular Trust

 

Venus

My son’s face is flushed
As he motions me towards his window.
I look up, and I now see what he sees.
Venus is singled out
Like a red peg on a world map.
I look down and catch his look.
He is grinning from ear to ear
Eyes all alight
Thrilled with his find.
I look up and wonder at it all.
She is just a star,
And I don’t see what all of the fuss is about.
I don’t see, but he does.
And because he does
She is his now, actually.
He may be the only boy in the world
Who notices her tonight…
No ordinary boy would…
Those boys who would be racing on their bikes,
Those boys who could almost fly…
Boys counting out loud to a hundred and five,
Boys chasing fireflies,
Boys who would know the swishing of Dungarees,
Boys who would know skinned knees.
The burn of peroxide,
The mother’s nervous lower lip bite.
It will only sting a little, all right?;
No, no ordinary boy would.
He has never been hushed,
Has never cried out loud.
Has never been to time out.
Never been lost in a crowd,
Has never played hide and seek.
Has never dipped his toes into a creek.
Never looked for shells on the beach.
My son who is amazed at finding a hole in his socks,
Sees the hole; in the sky.
He is all lit up
Face flushed
As if he has been on some grand adventure,
As if he has sailed all seven of the seas,
Loosed the Kraken,
Slayed the Dragon,
And rescued the damsel in distress.
Oh the wonder of it all…
My son, who doesn’t have enough strength
To crawl to the other side of his Captain’s bed,
Has found a star.
My son is looking up
Face flushed
All over a star…
Thrilled with his find.
And she is exquisite tonight,
Throbbing like a sore thumb
She will not be ignored.
I didn’t notice her before.
Why do I notice her now…
Oh my…
Now I know.
Venus has looked inside the window
And has seen my son.

Family stories from the Myotubular Trust

The Rose

For Mother’s Day
A rose I begged.
And then,
Once I had tired of it,
Often moved it place to place.
No more wanting it to decorate
With bloom and green,
And so it seemed
To me a burden.
And then
A thought came to my mind.
Of Jonah finally seeing it.
And to his little room it went.
And oh, my son,
With wondrous gaze,
Reminded me
With lighted face,
Had never seen such petaled grace.
And so,
I put it on the window sill.
When evening came
I moved the rose,
Surely he had seen his fill.
But when my darling son awoke,
He saw it missing from the sill.
And panic whispering to him
Turned his frantic looks about the room,
Grabbed my hand (What desperate moves…)
“Tell me please, who took my rose?”

And so,
I brought it back to his small place,
Upon the window sill he faced.
His rescued damsel in distress,
Was now there blessed,
Was now content.
She is not the sweetest one I’ve known,
But to him,
She is the only Rose.
To him,
She is the reddest red,
With him
She’ll sleep beside his bed,
For she, the blush of boyish love,
Is now alive,
Is now with breath,
Is now with feeling, blood and pulse.

Now more than what she was before,
Will take her root at his wood floor.
There she will live
And she will die…
Both under his small and watchful eye.
(And I, Beholding her in holy light,
Left his little room and cried.)

Family stories from the Myotubular Trust