Interests

Sunday, January 29, 2012

Some things are obvious


Joan Vennochi’s  Column in the Boston Sunday Globe puts the human face on what should be important to us as a society and to our government and politicians:

Go read it,  but here is the final line which rings so true:

My Birthday wish for him is a happy and productive life and a world willing to pay more than lip service to help him live in it.
As a society we can disagree about what should be functions of government but it should be obvious that helping folks, like James, is a function of government that all of us would agree with.
Its not.
Folks seem able to disconnect the reality of budget cuts from the real effect it has on the lives of individuals.  The typical response I get from conservatives when I put a  specific face on a particular spending cut is: “Oh not him- i'm not advocating cuts effecting him” and I expect that's the response they will have about James.  

But of course - budget cuts DO effect him. 

It doesn't seem that long ago that I sat in Senator Browns Boston office, with my son Tim and a number of folks protesting his vote against the extension of unemployment benefits. Browns' stand also held up some $500 million in medicaid funding for the state of Massachusetts and, in turn, funding for the disabled.  We held vigil in his office to put a human face on his decision.
Senator Brown was quoted in articles from that time ( emphasis added ):
 have great compassion for those programs, and have kept everybody informed as to where everything stands so they can plan,” Brown said in an interview this morning. “The issue is it’s going to raise taxes, it’s going to increase the deficit and there’s no way to pay for it yet. But they’re working towards it. They’re doing better. We’ll just see.”

And there you have it. Even while his waiting room was full, day after day with the faces of those citizens whom he “had compassion for” he still bowed down to the Tea Party  alter of “no taxes” and smaller government.  Despite protesting his compassion he still was opposed
Its hard enough to get the funding needed to support the disabled, even in a progressive state like Massachusetts. Each year it is a battle, even with a democratic governor and legislature. It is even harder when your Senator is beholden to a right wing ideology that calls to reduces federal spending on the very programs the disabled depend on. 
I originally was moved to post this simply because it was a wonderful portrait of James who needs and deserves our support as he turns 22. 
And then i couldn't help but think of that day I spent with my son Tim at Scott Browns office fighting for what should be obvious.  
Elizabeth Warren won't need a vigil in her office to fight for the obvious. 



Saturday, December 31, 2011

Really?

Heard while waiting at A traffic light on federal highway here in Florida: "That car is too small, wouldn't be safe in an accident." A not uncommon unsolicited comment while driving the smart car. But first time from a helmetless motorcyclist to his helmetless rider.

Monday, July 4, 2011

My Son had Brain Surgery today

Actually no. It was saturday morning; but the hours and days have blurred to become one. Exhausted to the point of dizziness.  Unable to feel having used up all feelings. Wondering what will come next.

--//--

25 years ago he had his first bout of brain surgery. The first occurred within hours of his birth. It evacuated a Posterior fossa bleed that was killing him and saved his life.

The second took place right in the NICU when a temporary shunt was placed to relieve pressure on the brain. It failed since his spinal fluid was was thick with blood and coagulated in the shunt.

Twice daily lumbar punctures to relieve the pressure and monitor the fluid went on for weeks.

The third surgery placed a VP shunt. He was 6 weeks old.

This Saturday morning a surgeon at MGH replaced it...from the ventricles to the abdomen.

He's been lucky, actually. 25 years without a failure or infection is an extraordinary run for a shunt.

When I started writing this I was flooded with things to say. I had a few minutes away from the hospital, I sat, I wrote the intro, and woke up an hour later....not sure where to take it.

About the raw emotion?

About the wonderful nurses?

About the ones who were not?

About the whirlwind that was the 8 hours from arrival to surgery?

About the weeks of hospital stays and other illnesses that predates this?

About the disparate payments between what insurance pays local hospitals versus MGH?

About my sons experience with the medical system over the last 25 years?

About the times it's done well by him? The times it has not?

About him and his life?

About the quote we just received for a new power chair?

About the politics of health care?

About the fever?

And as I sit here by his side,  I still don't know what to write, but that, My son had brain surgery.

(originally posted at Daily Kos)

Tuesday, April 26, 2011

Book return

The library asked for
The Routes of Man: How Roads Are Changing the World and the Way We Live Today - Ted Conover back before I finished it. Either I've A: been to tired from returning to work to read...or B: it's not holding my attemtion.

I expect its a bit of both.

I will need to create a new book list - started, not finished. The Routes of Man: How Roads will be in good company, I can add it to GEB

Sunday, April 17, 2011

Books

Picked up a couple of new books recently. The first while on a road trip to Rhode Island:
The Edge of Physics: A Journey to Earth's Extremes to Unlock the Secrets of the Universe
I've read several pages From it in a wonderful independent bookstore while waiting for Martha and this book definitely has promise....looking forward to reading it; I think it may keep me from finishing "The Routes Of Man - Ted Conover" before I have to return it to the library.

The other book:
The Golden Ratio: The Story of PHI, the World's Most Astonishing Number

Haven't cracked this one yet. picked it up at a local borders that was closing as a present to myself to celebrate my new hip.  290 pages on the  graphic that serves as this blog header has to be a good thing.