The Legacy

November is National Hospice and Palliative Care Month. One of our supporters, Gene Cohen, wrote a powerful reflection honoring those who haven’t survived during this awareness month that we’d like to share with you.

Everyone wants to be a hero. Everyone wants to admire and laud the hero. Everyone wants to heap praise on the hero, and put the hero on a pedestal.

Everyone wants to survive. Everyone wants to admire and laud the survivor. Everyone wants to heap praise on the survivor, and put the survivor on a pedestal.

Everyone understands at one level that the hero need not be a survivor to be a hero. The soldier who throws himself onto a grenade to save his comrades, while he is not a survivor, he is a hero.

Yet, when it comes to terminal diseases, these obvious truths are lost. While we know who the heroes are in the battles of combat, we get blinded as to who are the heroes in the battles of disease.

It is wonderful when someone overcomes a life-threatening disease, and it is horrible when someone does not, but those who do not survive never should be thought of as having less courage or being anything less than those who do survive: Life is not always a game whose outcome turns on merit, strength, or bravery.

If one wants to talk seriously about battling cancer, that talk should focus on the progress that might be made and the lives that might be saved if just a small fraction of the hundreds of billions of dollars proposed tax cuts for the super-wealthy being fought for the super-wealthy were instead devoted to research battle against cancer. If one wants to talk seriously about helping families with children stricken with life-threatening and life-ending diseases, battle to expand insurance coverage and to defeat fights to reduce or eliminate coverage. It is important to choose one’s battles, but it is equally important to choose the right side.

“In Phoenix, we are blessed with a place that understands the heroism of the struggle irrespective of the outcome.” Designed to deliver multiple adaptive types of on-site care, Ryan House embraces all children and their families as they navigate life-limiting or end-of-life journeys. Every day, in what is a true act of love of the highest kind, Ryan House delivers both the philosophy and the practice of pediatric palliative care. It is the only organization of its kind in the Southwest, and one of only two in the country. Its services are provided at no cost to families.

When life ends for a child cared for at Ryan House, Ryan House’s work is not done. It offers grief and bereavement support to families in a number of ways, including: Sibshops, family counseling through various programs, an annual community event to honor passed children, bereavement boxes to families that are filled with special keepsakes. Additionally, Ryan House’s Care Team provides anticipatory grief support to children, siblings, and their families.

The loss of a child is every parent’s worst nightmare. It scars any parent who has experienced it and the possibility of such a loss terrifies every parent who has not. I have lost a child. Please do not talk to me about what heroism means. Thank you to Ryan House for having the wisdom to truly understand what bravery is.

About Gene Cohen
Gene Cohen is a retired lawyer, who was a partner in the Phoenix law firm of Brown & Bain, now part of Perkins Coie, and then Senior Trial Counsel at the U.S. Department of Justice, Antitrust Division. He serves as director of the Jessica Jennifer Cohen Foundation (JJCF), a small family foundation, in memory and honor of his daughter, which provides grants to young people to enable them to carry out a community service projects and also endeavors to raise funds for organizations supporting families with children facing life-ending or serious diseases or counseling for people who have lost children to serious diseases.