Dear Trump supporters, I understand why you voted for him, but can you understand why I’m angry?

Dear Trump supporters,

I understand why you voted for Trump. I live in a rural area and work in one of the poorest counties in California, a county with no jobs, substandard housing and dirt roads. This is the kind of place Obama’s promises never reached. The people here are angry, and wanted to send a clear, loud message to Washington DC.

I understand, but can you try to understand why I’m angry?

My daughter has severe disabilities and is one of those people Trump mocked while campaigning. She is a woman who depends on government services for her survival. She lives with me and I depend on services to take care of her. Without the support of Social Security, MediCare and In Home Support Services, I would be forced to put my child in an institution. I thank my government every day for the help my family receives. Trump wants to take that help away.

My husband is a cancer survivor. “Obamacare” saved him and our family. Without subsidized health care and the changes in health care law, he probably would have died and I know our family would be bankrupt. So again, thank you government. I know it is not a perfect plan, but it saved my family. Trump wants to take that away too.

I am a rape survivor. Many women have accused Trump of sexual assault and rape. He brags about it, and now, a sexual predator will be president. What message does that send to women in our country? Our voices and our bodies don’t matter. Men can abuse us and we are powerless to stop it.

Trump is racist. He openly hates Mexicans and Muslims. He thinks black people should shut up about racist cops. And his win of the presidency sends a message to other racists that it’s okay to write swastikas on walls and beat up immigrants.

Many of the people I love are gay, lesbian and transgender. Will they now be denied legal protection to work and live peacefully? Will families be destroyed?

Again, I understand why you voted for Trump, and I know a lot of you aren’t racist or misogynist. But in voting for him, you told people who are racist and misogynist that it’s okay.

You can be the biggest bigot in town and  people will still respect you. Hell, they might even elect you president.

Rare Disease Day 2016 


What is it like to live with a rare disease? This is what my daughter says:

“Doctors try to help but no one does.”

“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”

“I have to go to the doctor a lot. That’s boring.”

“Everybody wants to poke me and give me a blood shot (blood draw)!”

“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”

“Why is there no medicine to make me feel better?”

As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?

We don’t know.

One special needs family reaching out to another

There are a thousand sleepless nights to get through when your child is medically fragile. Waiting for answers. Waiting for change. I pick up a book I’m too tired to read. Turn on the TV but it’s too loud. So I grab your laptop and start surfing. See what my friends are doing. What trips are they taking this summer? What did they eat? How many selfies did they take? But after a while all those smiling faces make me feel more alone.

I turn to your tribe, the other parents who are up at 3 AM surfing the internet while battling anxiety. Because no one understands dread more than the parent of a special needs child.

We parents would be lost and more confused than we already are without the internet. With chat rooms to swap war stories and blogs to share our ideas we see that we are not the only family in the world held hostage by illness. Instead, we know MediCare and Social Security screws with every family. Paperwork really does get more complicated. Marriages collapse and rebuild. Children thrive despite what experts say. And occasionally we get to laugh.

Reach out. Write it all down. Maybe someone will read it and for a tiny moment I won’t be so alone. Maybe my struggle will help someone else. And maybe, if I take the time to read other stories, I’ll find the answer I’ve needed to hear.