I have a friend whose 10-year-old son is dying.
Sam was born with Joubert Syndrome, a rare genetic disorder that causes global developmental delays and, more recently, kidney failure.
His Mother, Mindy is Blogging about it
Hospice is in place.
At night, every night as I fall asleep or try to,
I pray for them. Most of the time I have no idea what the fuck to pray,
so I just cry for them.
I know 5 mothers who have buried a child.
So, anyway, Sam
He is dying. Leaving an older Brother Jackson, Baby sister Clara, mother Mindy and his father David.
So I pray, cuz what the fuck else can I do? What can anyone do?
I ask for the spirit of life or peace or healing or love or whatever to wash over them
I pray that his parents can sleep
I pray for moments of peace
Even if it is a pee with out someone knocking on the door
Or a nice cocktail
Or a pretty sunset
Or humming birds
A night or even 10 minutes with out the other siblings fighting….( hey it can happen)
I pray that Sam does not suffer.
I could pray that his family does not suffer.
But they are going to anyway.
So I pray for strength to endure it.
I say “please” a lot.
She is far away. So I can not go to her house to make her laugh or take a bottle of cheap wine
So I pray
And I cry
For the loss of the dream that comes from having a child with such disability.
I cry with gratitude that my children are healthy.
Every night, i cry, as i am sure does his mother, if she even has the strength for tears.
I cry because, it is so fucking wrong that
there is hospice for children.
I cry because Sam will never grow up
Or go to a regular school
Or go to a school dance
Get an F on a test
Drive a car too fast
Get grounded for the F
Or have a girl friend
Or a boyfriend, cuz who knows?
He wont get a new apartment.
Or have a first broken heart.
Get married and have children.
But he would not be doing those things anyway.
And I can not know if that makes it worse for his
parents or not.
So many things and dreams that parents have for their children.
All the dreams that I have no idea of because my children are healthy, so why would I dream of anything?
I cry because no one not one of us is immune from this heart stabbing reality that babies and children get sick and die even in 2013.
This could happen and does happen to people we know and love
and even the ones we don’t like
and I could happen to you or me tomorrow.
It happens every day.
The only thing I can do it pray for S and his family.
And pray and pray.
I can not even
name all your names right now,
cuz who gives a flying fuck what your names are
when little boys are dying?
What am I supposed to ask for?
What does comfort for a parent
who loses a child look like?
What does it feel like?
Does it even exist?
If it does, then it must be supernatural.
That “peace that passes all understanding”
Well, G*d, with all do respect,
I call bullshit.
Because the parents I know who buried their children
I mean, they do keep going.
Cuz what choice do they have?
if they have other children
they have no choice.
They have to keep going
So in the mean time, as this family
goes though the unthinkable
the unfathomable task of
letting their first-born
Then, please. Please.
Flood his Family with
the peace that passes all understanding.
And all who
Know and love
And for Sam
May his journey to the other side
Be free of pain
Free of fear.
May Love be
All he knows.
And when the time comes for him
To cross, dear Sweet Sam
May flights of angels sing thee to thy rest.
Amen, and May it be so….
Mindy’s Blog is: