In the end, life ain’t no crystal stair

Langston Hughes’
Mother to Son

Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor —
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
‘Cause you finds it’s kinder hard.
Don’t you fall now —
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.

I could not write this morning. It was too dark. It is hard even now to write. Because I look for hope, and find none. I look for hope for a normal life, for freedom from hospital visits, for a home with my children all together, where my eight-month old son is stimulated by his siblings and not by hospital pumps. Where freedom means being in a field of wild flowers rather than simply walking with my son outside the unit. Where he does no squint outside in the shade but on the beach.

I cannot remember what it is like to be home. Maybe that is why it hurts so bad today. Because my family left yesterday and the emptiness is worse and the darkness more painful.

Of course we will go home. Of course life will not be like this. But it hurts that life is like this. It hurts that the greatest moment of hope today was immunology saying if they find something is not working right with his immune system that there might be a medication that can bolster it. They are working hard.

But we cannot turn back. What other choice would there be? It would be this or it would not be Peter. And he is so beautiful. And he smiled at me before I left the hospital today.

“Don’t you fall now –”

“It’s kinder hard…”

“Don’t you fall now –”

I cannot see any landings or corners. But God, I hope a corner comes soon.

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