Diminished Capacity

On Saturday, I attended a funeral.

For a single mom...of 8 children.

Yes, 8 children.

Her name was Bernadette. 

She was the definition of love and light.

Sunshine and faith.

It's an absolutely huge loss for all of us.

Impossible to understand.

Please keep all of us in your prayers, but most especially, Bernadette's beautiful kids.

*****

On Sunday, I dislocated and fractured my ankle.

I wish it was a good story but it was a terrible combination of a basketball near my desk.

I had the gift of an incredible crew who stabilized my ankle and got it ready for more x-rays and orthopedist recommendations -- 

Dr. Angel lived up to her name. I am forever grateful for the kindness and care I received in that emergency room:

Alicia, the nurse, Mike, the X-ray guy, and many others.

It's no fun.

A real drag.

Oh well.

*****

On Monday, Patrick had to get his blood drawn and we had to wait for the blood count numbers.

Tuesday, he had his big appointment with both his cardiologist and his oncologist to just have a check up...see how his heart is doing...make sure it all still looks good after having leukemia years ago.

Those blood count numbers still, 11 years later, haunt me.

All day long, I wait on the panel of numbers.

Acting casual.

Heart racing.

The numbers should be good.

Everything in Patrick's world has been healthy for quite awhile.

I try to talk myself down off the ledge.

Deep breaths.

So, on Monday night, waiting for the numbers,

I try to check Patrick's email and Kaiser account that would give me the full range of numbers.

The nitty gritty details.

But I couldn't remember his pin code. 

So I had to call for help.

If you're 13 years of age or older, your medical information is private and separate from your parents.

No kidding.

Parents need their child's permission to see anything in their record.

That's messed up.

I know I will have medical bureaucrats telling me why it's not messed up...

but on Monday night, it was messed up...

and on Thursday morning, it still is.

I just wanted to know his blood count numbers.

So, I call up Kaiser and ask them to give me the numbers.

I ask to have access to Patrick's medical online information.

AS HIS MOTHER.

I even use the Down Syndrome card, thinking it might give me an edge.

"Oh well, now that you mention that, Mrs. Foraker, I can help you get in to his records."

Awesome.

I'm so stoked.

Leg up on pillows, I follow the voice's advice.

I click this and type in this and get to new page after new page that is letting me into the system...

...and then I have a choice:

I have to click that my family member has "diminished capacity".

What on earth??

And then, like some movie with a million tiny photos flashing by, I picture Patrick...

typing up Romeo and Juliet into a screenwriting app.,

creating his favorite crazy sandwich combo,

riding his bike to school,

chilling in the backyard with John,

giving relationship advice to Jack and Mary Kate,

directing his cousins and younger sister in various stage ensembles,

backwards in time...to tying his shoe

taking his first shower on his own

winning school awards

surviving open heart surgery and looking up at me as a tiny baby waiting for me to be brave enough to nurse him afterward

dancing and thriving through freaking leukemia...

...and I am embarrassed to admit that I clicked that damn button and agreed with the computer that my kid has "diminished capacity"

I sold my soul to the devil.

Yes, I protested it as I did it.

I let the voice know that I didn't agree with it...

but I was desperate. 

I wanted the numbers.

And then, the universe did what it does in moments like this...it gave me a one-two punch.

"Oh, wait, you live in Northern California, so that won't work, you'll have to get your child's pediatrician to let you access your son's records."

Of course.

The voice did have the courtesy to let me know they were

"in the normal range".

But, being a leukemia/blood count expert, that didn't help much.

I wanted the numbers.

*****

Ever since that moment, I've been trying to wrap my brain around those sickening words

"diminished capacity".

It's settled on my heart that this is the reality of how the world sees Patrick.

The truth is that at this very moment, I'm way more diminished than he is.

Can't get around at all.

I need tons of help.

Nobody begrudges me that help.

*****

We all need help.

I've found solace with Desmond Tutu's wisdom.

Speaking about Ubuntu:

"It is the essence of being human.

It speaks of the fact that my humanity is caught up and is inextricably bound up in yours.

I am human because I belong.

It speaks about wholeness;

it speaks about compassion.

A person with Ubuntu is welcoming, hospitable, warm and generous, willing to share.

Such people are open and available to others,

willing to be vulnerable,

affirming of others,

do not feel threatened that others are able and good

for they have a proper self-assurance

that comes from knowing that they belong in a greater whole.

They know they are diminished when others are humiliated,

diminished when others are oppressed,

diminished when others are treated as if they are less than who they are.

The quality of Ubuntu gives people resilience,

enabling them to survive and emerge still human despite all efforts to dehumanize them."

*****

So, somehow, some way I feel the need to clean the slate...

to let the world know and Kaiser know and every other person on the planet know that 

I DO NOT BELEIVE THAT PATRICK IS 

DIMINISHED IN HIS CAPACITY

In.Any.Way

That legal term needs to disappear.

NOW.

That medical model of disability needs to have bricks thrown at it.

We are all human.

Inextricably bound together.

Interdependent.

Vulnerable and Needy.

We all need support.

I want to live in a world where Ubuntu is what we expect of each other...

what we give each other.

I'm starting with myself.

World, I pledge to offer Ubuntu.

to everyone.

everyday.

Please join me.

Let no one be diminished.

by words or deeds.