Life with Autism

Tuesday, April 29, 2014

He's my son...

I like to pick pictures for this blog that stand out and speak for themselves.  Where I don't need many words to tell the story -- just the picture.  Though who am I kidding, I always end up using many words!  Today was one of those days where the picture speaks for itself.  The recovery room of Day Surgery.  Simple procedures made so complicated by autism and sensory issues.  So after a year and a half waiting on a waiting list for a dental exam, teeth cleaning, and x-rays, today was our day to finally have that done. Yet again.  We should have some sort of "Fast Pass" card like they have at theme parks, but for these multiple Day Surgery type procedures we've had to have done through the years, and no doubt will for years to come.  Without thinking too hard, I can count at least eighteen of these types of situations we've been in, and our son is only twenty years old.  No matter how bad or easy they end up going, the result is the same.  My adrenals are shot by the time it's over.  But mercifully, today was different thanks to our entire church praying us though it, an entire autism community of friends praying and wishing us well though it.  It went really smooth.  Which is rare.  It's how it should be, but often isn't.  Todd and I even had moments of crazy, mad, wonderful sitting in the waiting room taking selfies and laughing hysterically at all the bad pictures.  I was laughing so hard I could hardly hold the camera steady, which resulted in a whole other set of blurry out takes!  As I shared in a Facebook post, I'm truly surprised someone didn't ask us to leave.  We were laughing loud.  Which is another rare event in our "Life with Autism" as typically it's Brandon's humming or stomping that is loud.  Not the carefree laughter of us parents enjoying a few stolen moments together. 

But this picture...

It says so much to me as I was standing there taking it.  Todd was sitting there leaning on the bed rail just watching Brandon.  Praying for him I'm sure.  Thanking God for the smooth sailing of the day.  And then Brandon woke up and he was just laying there looking at his Dad.  It was such a beautiful moment to witness.  I'll never in this life know what Brandon was thinking when he woke up and saw his Daddy.  Did he feel reassured that he was there.  Did he feel confused wondering where he was.  I cringe asking myself the question I feel most heartache wondering if he truly knows and understands who we are and how much we love him.  Just what his daddy would do for him.  Some can say they would lay down their life for their child.  Brandon's daddy has.  He has given his everything for him.  This man who is tough enough to attempt the "tough mudder" this year, this warrior who escapes suburban life each night he can to lace up his combat boots to run in the woods through the mud and bushes in the dark of night.  This man who can do anything, fix anything, but who is driven to his knees in prayers because he knows how helpless he is on his own to help his son.  This man who knows that with the demands of autism, he will never be first as he should be.  Never have empty nest for us to reclaim all those years autism has stolen.  This man who will never get to retire because of the lifelong, mounting expenses of autism.

In this month of April, nothing makes me more aware of what autism does to a family than that.  But as I've learned in all these years living that "Life with Autism" - I saw too yesterday in that picture, just how much wonderful there has been in our crazy, mad of autism.  We had moments of togetherness sitting in the waiting room.  Our only respite in weeks spent sitting in the corner of a packed waiting room taking goofy pictures of ourselves and laughing hysterically.  We didn't have to tag team anything.  We didn't have to redirect Brandon, get up and do anything for him.  We could just sit together for more than ten seconds at a time and we could get out more than two words at a time without being interrupted by hmmmmmmmmmm.  We could for the first time in a while focus on our "other" son and the joys and heartaches of his journey thus far.  We could sit quietly and know we each were thinking how thankful we are for how we have survived.  For who has helped us survive.  Blessed by how we have been able to thrive.

 But still that picture.

As this month and all the ugliness, non-awareness, and inaction that was represented by it comes to an end, I look at this picture and am simply thankful to have a husband who loves this boy with all he has.  Who has given his life for him.  Who has given his all in prayer for him.  Who sings this song in his heart to God for him...

"He's My Son"

I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Can You hear me?
Can You see him?
Please don't leave him,
He's my son.

I know that God hears him.

But I wonder when anyone will hear us?

I wonder when April will be different for my son, all of our children?

To our nation, society, the schools, the medical community, government agencies, service providers, and even most autism organizations....

Can you hear us?
Can you see them?
Are we getting through?
Can you make him feel all right?
Please don't ignore them,
They're our children.

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