12/21/2012 03:04 pm ET Updated Feb 20, 2013

We Are the Lucky Ones

In the five days before Christmas, most children try to be on their best behavior, knowing that Santa is watching. Unfortunately, my daughter couldn't do that. Like 1 in 5 Americans, she has a mental illness. This time, she got angry and kicked a teacher. So, I'll be sitting home with my 10-year-old the day before Christmas break as she serves a one-day home suspension.

Most of the time, you would never guess that my daughter would react in a violent way. She can light up a room when she walks in it. She is funny and can engage anyone in a conversation. She is great with little kids and they love her. She loves dolphins, and the color teal, and books and art. But she also suffers from a brain disorder that makes her mood change and prevents her from always acting or reacting the way her peers do. She has been diagnosed with bipolar disorder, ADHD and anxiety disorder since she was 8 years old.

We are one of the lucky ones because we have advocated for our daughter and it has paid off. But it is hard work. When this happened yesterday, someone said to me, "but she was doing so well." And that is what is so difficult for people to understand about mental illness. It's instability. Our family lives a life of uncertainty. We never know when our daughter will have a raging tantrum or several days of mania or depression. When she will get so angry she will attack me, her younger brother, our little dog. We live a life with an emergency plan in place. Neighbors ready to come in a single call. The police on speed dial. Therapists whom we can contact in a crisis who respond. We are the lucky ones.

We are an upper middle-class family living in Fairfax County -- one of the wealthiest counties in the country. I have a Masters degree in public policy, have worked in the Federal government and now work at George Washington University -- and yet it has been my hardest job to be my daughter's advocate and full-time care taker.

Our family has health insurance, yet none of our mental health providers take insurance. There have been weeks - -bad weeks, like the week after I had to call the police to our house after my daughter raged for two hours and there was nothing I could do to calm her down -- that our entire family has to go to therapy and the checks add up. But we are the lucky ones, because we can afford that.

We are the lucky ones -- we were able to find a hospital bed when she was in third grade and suffering from mania, harming herself and others and needing her medication regulated. We were able to access county services after she was hospitalized. We can afford to pay for all four prescription drugs my daughter is on, to pay for the respite care we so badly need to catch a short break and spend time with our six year old son. We have been able to find a public school with a good special education program for the emotionally disabled and are pleased with the support and education they provide. We are the lucky ones.

But there are many families who aren't lucky. With 1 in 5 Americans living with mental illness, we know that there are parents and children who are suffering and not talking about it.

When we had to put our daughter in the hospital I wasn't sure what to tell people. It's not like people sign up to bring casseroles to the mentally ill. But I did tell them. I needed help. And they did come -- they brought food and support.

I began to speak out. If my daughter had any other illness I would be screaming from the rooftop for help - so why not mental illness? The mental health system is horrible. I'm terribly afraid of what is going to happen as she grows older and we hit adolescence and the older teen years, much less her twenties when services are dismal. I must be prepared. I must advocate for her. We must do better for kids like her and families like ours.

When I went looking for a support group for parents of younger children with mental health issues in Fairfax County there wasn't one. I couldn't believe it. So I started my own. At our third meeting, 10 parents showed up. We were desperate for support and information. We were afraid for our children. Many of us have had knives pulled on us. Our younger children have been threatened. The police know us by name. Our children are in and out of hospitals and residential treatment centers. We are looking for names of good mental health care providers. And we need support because some days, as parents, we don't know how much longer we can do this.

Our family is one of the lucky ones. But there are so many out there who aren't.

I am speaking out because I want others to know that there are so many families like ours who are suffering. The system must change. It is unacceptable. There is work that needs to be done. My heart goes out to all of the families at Sandy Hook Elementary School. And all the parents of children with mental illness who ache for this country to do something now before this happens again.