In my previous post I wrote to you all about what appeared to me as a winnable fight: That we can get a change social security law § 404.315 and amend this law to be able to waive this waiting period in the event of a terminal illness, and to ask for help for my niece Courtney.
www.dailykos.com/...
Today, in between getting legal documents put together for Courtney and her Mother Suzanne, I’m thinking through possible plans over the coming weeks to define a strategy to do just that, as well as keep everyone up to date what’s going on with it. Once the silly season end, there should be a some room to help get calls in to our newly minted Congress and their staff. We’ve done it before. If we have DC folks in kosackstan, it could mean a drop by with staffer with some draft law that we would put together as a team. K-Street’s got nothin’ on us. We’ll have to pop into the Social Security office of Legislative affairs and get their sense on the idea, and where they might think we should go to really get this done. While I believe the issue to be a no-brainer, and shouldn’t meet partisan resistance. I’m committing to this fight, and you already know why.
Anyways.. I want to start talking through this because I know it can be won, but want to hear from folks here at dailykos think, and use the election period to get thoughts from people who are smarter and have more experience with lobbying for something like this. Some plans for future blogs will be to start establishing names and contacts at the Social Security Administration, and get a sense of our new congress, who will be reliable partners in this fight, and start to engage their offices to keep the conversation going.
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Today Suzanne had a bit of a setback and was admitted to on-site hospice care for pain management. The difficult thing about Pancreatic cancer specifically is that it metastasizes around the spine, and every possible pain that a human body can endure is endured all at once. We are hour to hour, but the morphine is able to get a smile on her face from time to time, and these last days as a family in hospice will be precious.
I’m back and forth to Pennsylvania doing Mr Mom (220, 221. whatever it takes), and yes, that “Doing it wrong” piece of dropping kids off at school.. That really happens. Who knew.
We retained lawyers, to get some early filing in for hearings on custody and whether Catherine could stay in her home here in Delaware with her sister after this traumatic year.
As a brother-in-law I feel my role should be to be there when they need, and give her, her mother and her sisters as much space and peace as possible. I write and prepare documents and letter for the court, pop in for signatures, and make really bad jokes, and come back to their house in Delaware to keep going. I’ve been quoting Joe Biden and some of speeches to Gold Star families out of nowhere.. :)
Why are we campaigning so hard for Hillary Clinton? If you’ve been through a situation like our family is right now going through, you know that these hospice services are kept going with contributions from benfactors, charities, but mostly because the Democratic party’s argument is winning. If the core argument of right-wing conservatives change that needle, places like the Delaware Hospice go away, and Suzanne is branded on FOX news as yet another lazy american who allowed herself to be in a position where she can’t afford dignity in an end of life situation. And why should hard work Americans have to pay taxes to help people like her
Now, when that aforementioned right wing talking head came back to consciousness, he’d be looking up at me, rubbing his forhead, then dragged here to the Delaware Hospice to be shown what’s what. This place is here because you all are here, at dailykos, lit-dropping neghborhoods and making phone calls to make sure that this country sees more help for people who need it, not less.
www.delawarehospice.org/…
At the bottom of each update I do want to post my niece’s fund me page, as the outpouring of support from dailykos has been a boost on their darker days. It never ceases to amaze when people who have never met reach out to help each other that need it.
It’s a constant reminder that when this process starts to get hard, we’ll realize we have no clue about hard really means, and keep going.
Always remember that these are strong and proud people, and $20 fills a tank of gas, and will take the worry out of being able to drive back and forth from home to hospice. $300 fills the oil and heats the house. $5 is a commitment to staying engaged in the War on Cancer, and has been phenomenally helpful to hear the stories on the gofundme page from folks who have gone through similar experiences.
www.gofundme.com/...
Thank you all here at dailykos for your help and support. Next updates will follow as time and chaos permits. Don’t forget how much you have already done to make Courtney and Catherine’s day-to-day that much better.
westcott