Three years ago this week, we were reeling. My husband Fred Holliday was hospitalized with metastatic cancer that had spread throughout his body. Soon he would not be able to walk. Soon we would have to tell our 10 year old son Freddie and three year old Isaac that Daddy had cancer. Soon Freddie would see first hand how the health system was failing his father. Isaac would just hold his Daddy.
In the next 11 weeks Freddie and little Isaac would watch their Father slowly die. They would watch this horror in five different facilities as the staff asked them to sit still and be quiet. Freddie has autism, so he has poor vocal modulation. Isaac has ADHD. It was a very stressful time.
After Daddy died, Mommy began to paint about health care and health reform. Isaac went to rallies and Freddie went with Mommy to speak with senators on Capitol Hill. Daddy had not been insured most of his adult life so he did not get the continuity of care that was needed to catch his cancer in an earlier stage.
As a family we would fight the good fight to improve care for us all.
Freddie would draw this.
He would see so many evils were arrayed against us. This is what it felt like to take on a health system that put a premium on money over quality. This is what it felt like to be the small ones fighting for justice.
Years would pass by. The fervor of the fight can leave you when you struggle for so long. The epic battle can turn to a stalemate of exhaustion.
Freddie would draw this:
Here once again we are debating the Affordable Care Act. The Supreme Court is discussing the constitutionality of the universal mandate. Once again we are debating rights and responsibility. It can be hard to stand and fight for what is right. It can be hard to understand complex legislation. But it is not hard to understand that we must choose between what is right and what is easy.
Every day I live as an example for my sons; we are insured family now. I have embraced a mandate that I must be responsible for my health and in return expect to be considered a valuable part of the care team. I have activated children who help create their Electronic Medical Record and expect access to it.
Today my son Freddie and I were debating the merits of accepting a free trial of Netflix, if he had no intention of subscribing. Freddie asked me how I would feel about that. I said I would not like it. He said “Yeah, it would feel sorta like stealing.” Freddie looked down and fidgeted a bit and said “You have that thing, what is it called? Oh yeah, honor.”
That is what I try to teach my children. There is great honor in treating the sick and well with the same degree of dignity and respect regardless income level, age or job status.
That is the view of health reform from the Holliday family, still fighting the good fight three years later.