COLORADO: Had I visited a psychic two years ago and been told that in a few short months I would be waving the cannabis flag, I would have called her crazy, grudgingly handed over my $30, rolled my eyes and walked away.
But that was a long time ago, and I was sure about a lot of things then. One of them was that medical marijuana was every pothead’s excuse to get high and stay high, guilt-free. After all, I’m not so old that I haven’t sat in a classroom and pledged to “say no to drugs.”
More than 700 days, some 30 portraits and one immense love for a little girl later, I’ve changed.
My niece, Hailey McGuire, was born seven years ago with Dravet Syndrome. She had her first seizure when she was 4 months old. I didn’t understand the implications. I never had seen a seizure. The first time I saw her tiny body contorted and convulsing, I knew I had to do something. Anything. The problem with seizures is that there’s nothing to do. You sit. You wait. You love. You try different medications – dozens of medications. Some work for a short time; others don’t work at all. And horrific side effects are guaranteed.
The first four years of Hailey’s life – or as I call her, Teapot – went by somewhat uneventfully. Sure we had the trips to the ER and the hospital stays, but that was becoming our new normal. Then two days after Christmas in 2010, everything changed. Teapot was admitted to the PICU at Denver Children’s Hospital with uncontrollable seizures. Her meds weren’t working anymore. She was placed in a medically-induced coma to stop the seizures.
That’s how I met Paige Figi. Figi and her husband, Matt, have a daughter, Charlotte, who also has Dravet Syndrome. The Figis knew of Teapot through a Facebook group and started a fundraiser to help pay for two medications that had not yet been approved in the U.S. Teapot recovered and we stayed in contact with the Figis.
Two years ago, Charlotte began having 200 to 300 seizures per week, and doctors had tried all seizure drugs. As a last resort, the Figis started Charlotte on cannabis oil. She stopped seizing. Charlotte started eating, walking, smiling and laughing again.
I went to see Charlotte shortly after she began cannabis therapy. I sat down with her while she ate, on her own, after years of being tube fed. That image erased decades of misinformation from my mind. I couldn’t stop staring at her. I knew that seizure-free moment was nothing short of a miracle. I knew there was hope for Teapot.
I began attending Realm of Caring support group meetings to help with child care. Realm of Caring is a nonprofit that provides support and education to parents of children using, or waiting to use, cannabis oil. I witnessed an amazing thing happening in Colorado. Because medical marijuana is legal and the strain needed is available, parents have been packing up and leaving home to seek a better life and medicine for their children. They have formed an extended family here. In this family, everyone has a part. No one talks about it because words aren’t necessary. In this community, when something needs to be done, there is always someone waiting to do it.