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PHOTOS COURTESY OF DANIELLE KEYSER
It’s Sunday morning. I look over at the clock beside my bed at 5:59 a.m., just seconds before the alarm starts to buzz. I roll over, place my hand gently on my daughter’s chest, and wait to feel the subtle rise and fall of her ribcage. Ahhh, Anna is breathing. I’m good now.
You’d think having just celebrated her 6th birthday, that I would no longer feel the need to make sure Anna is still alive every morning, much less have her nestled between her father and I night after night. But when you have a child with intractable epilepsy, all the conventional rules on parenting will inevitably be thrown out the proverbial window.
I make it to the airport with time to spare. I sit down in the baggage claim area, nervously tapping my feet on the tiled floor. And then out of the corner of my eye, I see Paige Figi. My heart skips a beat as visions of Charlotte’s face flash in my mind. And trailing right behind is Josh Stanley, the “Robin Hood of Weed.” My heroes. They are here in my home state of Pennsylvania to support a group of parents seeking access to CBD-rich cannabis oil for our critically ill children.
Sunday evening is spent with friends, family, Team MMJ members, and a small handful of political figures at an educational forum. We all listen intently as Josh and Paige speak at length about the studies going on through Realm of Caring, the work being done in Israel, and most importantly to us, the work that needs to be done in our state. The forum was scheduled with very short notice so I can’t be too angry at the 203 representatives, 49 senators, and 1 governor that didn’t bother showing up. The optimist in me stands up at the end and thanks everyone that did show up, because from here on out those people will be better equipped to advocate on our behalf.
We wrap up our forum, take our guests back to the hotel, and I set to work at home. I have a lot to do if I’m going to be ready for our rally on Monday morning.
When I finally make it to bed, I begin to feel that familiar twitching at my back. Every 3 or 4 seconds, Anna’s knees and forehead are being thrust into my spine. My poor baby. The seizures wake her as I roll over to see that it is now 4:00 a.m. Good morning.
I cradle Anna and comfort her until the seizures pass. Then I carry her downstairs to the living room. Wide awake, she sits and plays Monkey Preschool Lunchbox on the ipad, smiles in my direction, and says, “I’m okay now.”
I brew coffee, grab my computer, and curl up next to Anna. She continues to have clusters of seizures until 6:15 a.m., when she finally lies her head down on a soft blue throw pillow and drifts back to sleep.
Scanning my messages, I realize I’m not the only mom who’s been awake most of the night. Anna isn’t the only child who’s been seizing since the wee hours of the morning.
Two hours and fifteen minutes later, I’m standing in the rotunda of the Pennsylvania State Capitol. There are people everywhere.
The slideshow of our children’s pictures and bios is set up already. I see little Jack’s picture. The caption below reads, “Jack had a virus that traveled to his brain.” Pearl Jam’s “Just Breathe” is playing softly in the background. I can’t help but be completely overwhelmed with emotion.
I turn to my left and see Julie and her daughter, Sydney. Sydney is one of our Dravet kids. She wears an eye patch and her home away from home is the ER. I can barely find the words to say when I spot Heather, whose daughter Callie got a flu shot at age 4, developed encephalitis, and suffered 3 strokes as a result. Callie is blind now and although she’s being treated with anticonvulsants, she has yet to find relief from the seizures she experiences.
We assemble by 10:00. The news crews are here. It’s go time. My good buddy Dana welcomes the crowd and introduces me to speak. I feel like I might throw up. I’m holding Anna. Her head resting on my shoulder gives me courage.
My voice shakes as I speak of my faith in our elected officials, my faith in our citizens, my faith in this medicine. Josh and Paige join us at the podium. The energy in this space is almost palpable. How can you not feel excitement when you have world changers in the room?
My dear friend (another Heather) speaks next. She has her sweet girl, Hannah at her side. A year ago, Hannah, age 10, was still walking, talking, and smiling. Today, she sits next to her mother in a wheelchair, gazing sadly to her right. Hannah is skin and bones. She is incontinent, overcome by a deadly neurological disorder. I want to cry when I look at her. I want to hold her and pray. I want to somehow lay a hand on her and absorb the electricity so that she can start living again. Am I delusional? Maybe…But these are thoughts that swim through my head as I scan the room of sick children.
The press conference is soon over and I see Amy walking by with her 4-year-old son, Cameron. Amy is soaked because Cameron was seizing in her arms and lost control of his bowels. I remind myself that I can’t start crying now because I just won’t have time to compose myself before I need to focus again.
Next, we go to a forum downstairs in a hearing room. Paige shares Charlotte’s story with the group of lawmakers and staff, explaining that nearly 2 years after her daughter’s first dose of this magic oil, derived from the CBD-rich medical cannabis strain now cleverly named Charlotte’s Web, Charlotte is doing wonderfully. Charlotte is talking, she is hiking, and she is beautifully and miraculously free from the bondage of epilepsy. She has gone from 300 grand mal seizures per week to 0 or 1 per week.
Some mothers from our local group share their stories. Deena talks about her son, Chris. He’s severely autistic and has tuberous sclerosis. She shows us the helmet she wears when her son “rages”. Life with these debilitating conditions, at times, proves to be far too much for 16-year-old Chris to handle.
From there, we race through the beautiful halls of the Capitol to the Media Center where we hold yet another press conference. Again, we hear from Paige; no matter how many times we hear Charlotte’s story, it just doesn’t get old; it is nothing short of a miracle. The best part, by far, is that Charlotte is just one of the success stories coming out of the great state of Colorado. Charlotte has had a 99.7% reduction in seizure activity; some children are experiencing a 100% reduction.
After Paige is done, our wildly entertaining, liberal-as-the-day-is-long Senator Daylin Leach speaks. His message is simple: he knows that the new bill that he is co-sponsoring with one of the most conservative senators in Pennsylvania, Mike Folmer, won’t be perfect. We won’t all get exactly what we want. But as Daylin says in his speech, “We’re not going to pass on the good, in order to achieve the perfect.”
Daylin’s heartstrings have been tugged by the speaker he introduces next, Christine. Christine’s son, Garrett, is almost 3. He is a Dravet child, which means there is a genetic mutation in his sodium channels. Garrett has lost his life skills, and will lose his life if we can’t come to a resolution in this state soon.
And then my buddy Dana speaks about her daughter, Lorelei, who has somewhere around 400 absence seizures every day. Lorelei is a shell of the happy little girl she once was. Dana also reads a suicide note from an American veteran who sadly lost his battle with PTSD.
If you are in the Media Center today and don’t feel moved by these stories, then you may need to have your ticker checked. How can we as citizens not demand a call to action knowing that our lawmakers stand by and allow their constituents to suffer?
There is no time for bitterness though; we have a meeting to get to. We walk swiftly to the Health and Welfare building a block from the Capitol. Our Governor hasn’t agreed to meet with any of us yet, but he has minions. And they are willing to sit down with us. Whew. Tough crowd. Their faces are stoic. I can’t help but feel we are walking right into an ambush. There is one staffer in the room who truly seems sympathetic, but even that staffer argues that we need FDA approval in order to safely medicate children.
As tears stream down my face, I’m prompted to say, “But our children don’t have time for FDA approval.” I would have also liked to exclaim, “Take your FDA approval and shove it!” But I bite my tongue. You’ll catch these flies with honey, Lolly, I tell myself over and over. After stating our case, the staffers assure us they’ll do their best to educate our Governor.
We return to the Capitol feeling cautiously optimistic. We’re finally able to exit downtown Harrisburg and go to a local restaurant to decompress. We talk about our children and swap good pet stories. Then we return to my house to veg out and get some pictures. I have to admit, the starstruck teenager in me comes out when I walk into my living room and realize that my heroes Paige Figi and Josh Stanley are sitting on my couch. They’ve left the comfort of their homes in Colorado to assist us in our fight to legalize medical marijuana in Pennsylvania. It feels so good to see success stories in the flesh.
I think about all the stories I’ve heard today, the stories of Hannah, and Jack, and Sydney, and Cameron, and Callie, and Lorelei, and Garrett, and Chris. I have hope that someday soon, their moms – and so many other moms – will be able to tell very different stories, stories that end with their children getting the medicine they need and living happily ever after.