Friday, July 7, 2017

Warrior Woman, checking in.

Lisa, Kristen, Senator Feinstein, Nina and Me. Warrior moms all. 

I had the distinct honor and privilege to be one of three moms to meet with Senator Dianne Feinstein today. Senator Feinstein was visiting UCSF Benioff Children's Hospital and wanted to meet parents who could help her better understand and articulate the full impact the proposed medicaid cuts would have on those who benefit from the program, but are not one of those perceived to be in the typical category of medi-cal recipients. (Note, medicaid is called medi-cal here in the great State of California). I cannot tell you how thankful I am to have that opportunity. I am so delighted that the Senator wanted to hear our stories and that UCSF asked me to be one of those people.

I told her how much Maggie and our entire family benefited from the medi-cal program. Maggie qualified under a waiver program for those with complex medical problems. While we have always had private insurance, it did not begin to address her medical needs. Once she started receiving medi-cal we we able to get the home nursing we needed, and her equipment and co pays were taken care of.  It saved us financially, and improved and extended her life. I would be laying awake nights worrying now about what would become of Maggie if these cuts went through, and I still worry as a citizen, but I don't have to worry about Maggie anymore.

Senator Feinstein was interested. She wanted to know how Maggie's quality of life improved. I didn't have time to explain it all, but I told her about school and going to the mall and hanging out with her friends and being part of the community and the family - none of which would have been possible. I told her everyone has to live the life they were given, and Maggie got the chance to do that because she had access to excellent medical care at UCSF.

When I finished, the Senator listened to the other moms and asked pertinent question about their children. She wanted to know how they were doing, what the prognosis was and how the moms managed the care. She called us all warrior women, a title I will wear proudly.

When we finished the small group meeting, we proceeded to a press conference. (Please stand back, one at a time...). I made a speech telling Maggie's story again and tried to hold it together. It was difficult because aside from the press, the room was filled with UCSF staff, many of whom had cared for Maggie over the years. There is no way to convey the gratitude I have for them. I was shaky, but didn't lose it, Apparently, I  made a lot of people cry. (Booyah!) Kristen shared the story her lovely complicated, bold and entertaining daughter too. She has had a rough begining and continues to fight, but has an excellent prognosis.

The chancellor, the executive director and the medical director of the hospital all spoke passionately about the need to protect the medical care system for children and for everyone. And then the Senator spoke.  She is amazing.

Senator Feinstein is working hard to protect our children from the horrible cuts the proposed health care bill will make. Millions of children and adults will be effected and the health care system so carefully built will go into a tailspin. It has to be stopped.

You can help. Senator Feinstein urged the audience to call every senator you can - particularly those on the Republican side of the aisle and tell them how devastating this will be for the Maggie's of the world and for all the children. Think of your elderly parents, think of just about any child you love, know or have ever seen. They will be effected by this as will the generations of children to come. Maggie paved the way for the next generation to go farther and be healthier. Please don't let that have been for nothing.

Call. And tell your friends and family to call. This can be stopped. We deserve better. Please let the senators on both sides of the aisle work together for something that will work for everyone. I don't care what your politics are. I don't care who you voted for. This is beyond all that. It's the future of our children and grandchildren.

Spread the word.