Where were you on September 11, 2001
I was becoming a first-time mother at Crawford Long Memorial hospital. I was born there; my mom was born there. It’s a tradition.
Although I may have selected a different hospital provided I knew what would unfold that morning. It’s odd because no one wanted to come and see us in downtown Atlanta because of 9/11 and now looking back, I am sitting here, typing her story, alone once again in the hospital. Maybe it was a small glimpse into what would later become “our normal”.
Later that evening, I finally delivered a healthy 7 lb. 15 oz baby girl. In fact, the hospital nurses suggested that I name my new bundle of joy something related to the events of that horrific day. I politely declined as her name was already picked out on 11/2/91, when I met my guardian angel. I was just 12 years old at the time and I said way back then “when I have a baby, if it’s a boy I will name him Victor (after my guardian angel) and if it’s a girl, I will name her Victoria”. Thank God, she was a girl! I don’t think I would have stuck with the name Victor any way. Her name would later reveal just how Victorious she really is.
At her one-month checkup at the pediatrician’s office, they told me “Like any good parent”, I should go and ahead and proceed with her immunization shots, which I did so. It was like I was guilted into it. In fact, I was crying before the appointment even began because I did not want anyone to inject needles into my newborn baby. More so, I also did my research on vaccines and quite honestly, I wish I had done things differently. At the time, I thought I was doing what was best for my baby but in the back of my mind, I was thinking about my sister in law and her younger brother, who was affected by the Mercury in immunizations. However, the doctor reassured me that there is 1 in 30,000 chance there would be seizures because of the immunization shots. The pediatrician went on to say, “the old vials containing Mercury have been removed from the shelves”. So, we went ahead and proceeded with her first set of immunization shots. And afterwards I watched her like a hawk. I will add, we decided to skip immunizations altogether with her two younger brothers and they are fine.
Of course, when she began making odd movements, I rushed to the local E.R not once but twice, only to be discharged with a new prescription and simply advised to follow up with the pediatrician. It was like the doctors were not taking my claims seriously. They thought it was heartburn or reflux, they seemed to question these “odd movements” that I was seeing either because 1) I was a new mom 2) I was in my early 20’s, they treated me almost as if I had zero creditability but I knew that I had my “new mom’s intuition” and that was all I needed. In fact, the day after Christmas, we were at Stonecrest Mall and Victoria had a grand mal seizure, the jewelry store clerk was shaking her keys in Victoria’s eyes but she would not flinch, the paramedics who responded to the mall, inquired “if I had actually ever seen anyone have a seizure before” The short answer was no but he didn’t need to know that.
Then on Jan. 2, 2002, My suspensions were confirmed, I was not a crazy new mom imagining things.
Victoria was diagnosed with infantile spasms, basically seizures in infants. The Neurologist gave us three different medication options, we could try a drug that would “dummy her up” in his words, called Topomax, or a drug that was not FDA approved and we would have to obtain it from Canada or a drug called ACTH where we would inject her twice a day, basically a steroid. He went on to explain how tough life will be for her, the doctor was right about one thing, he said “she will be profoundly mentally delayed”. This only caused me to fight harder for what she can do instead of focusing on what she could not do. Later when she was diagnosed with Mitochondrial diseases, they told me that I needed to worry about her quality of life, not quantity. Basically, in short, I needed to prepare for her funeral service as well as she will not walk or talk. When I pressed for more information about this new diagnosis, they said “she will not live past adolescence”. I must add that we just celebrated her 16th birthday and not only does she walk but she runs too.
Fast forward to Spring 2013, at this point we already tried every pharmaceutical drug presented, 13 different medications to date, we’ve obtained a $23,000.00 seizure alert dog from Ohio, met with a Neurologist at Detroit Children’s via Angel Flight, met with a Specialist in San Diego at a UMDF conference and she also has a Vagal Nerve Stimulator placed in her chest, basically it’s like a pace maker for the brain. She just received her third one, in fact that’s why were at the hospital today, combating seizures has been my goal since Jan. 2, 2002.
So, when medical marijuana landed on my radar, I was not entirely opposed. However, I was in Law Enforcement. A Corporal at the time, that oversaw other Officers. I knew this could be a potential issue considering Georgia did not have any medical marijuana laws on the books. I resigned from a career that I love and miss greatly. Then I quickly collaborated with other Georgia seizure parents and we got busy lobbying.
In January 2014, our group was advised by a paid lobbyist that basically to get any medical marijuana laws passed in the State of Georgia, we needed specifically a “white, middle aged, male, Republican” and I thought they were kidding. We all set out on a quest and found a champion in Rep. Allen Peake.
At the time, we didn’t know how much of a Champ he would later become.
Through our perseverance and determination, we created a group called: Georgia’s HOPE. Which is basically parents and caregivers who volunteer to lobby on a state level. We have a website; a Facebook page and we also provide Cannabis 101 classes where we discuss the current law and breakdown cannabis. This is provided by Georgia seizure parents who set out on a quest and have not stopped since. All we need is a venue and an audience and we’ll be glad to set up a class. This needs to happen all around the state including Doctors’ offices. I was surprised when a local church offered to host a class. Being a lifelong resident, I’d never thought I would see the day where that would happen, this is called the Bible belt for a reason.
On April 20, 2014 the last day of the legislative session, the Senate and the House were going back and forth over certain bills, specifically a bill called Ava’s law, and the House did not want to pass it and of course the Senate did not want to pass the medical marijuana bill, the clock struck midnight and both bills died on the floor. Rep. Peake and our small group of parents, that he lovingly referred to as the “Dream Team” was devastated to say the least. For me, It felt like I’d lost a loved one, I was nauseas and I had to pull over my vehicle because I could not see through the tears. I could not breath. I immediately called the “medical refugees” who were living in Colorado, that I had promised when we began this journey to bring back home to Georgia and I apologized profusely while sobbing. It was a kick in the gut. We all took some time off and agreed to return next legislative session with a bigger support group.
That following June, Victoria left her last day of elementary school in an ambulance headed to the E.R for uncontrolled seizures. I knew at that moment, I needed to get her to Colorado. After one failed attempt at bringing cannabis oil home, I knew we would have to physically move there even if it meant leaving my other children behind. I applied for the Journey of Hope grant established by Rep. Allen Peake and I borrowed a minivan from State Senator Butch Miller then on Friday, June 13, 2004, we headed West. Along with Victoria, her seizure alert dog, Choco and my mom.
On June 18,2004, she received her first dose of cannabis oil. And a few days later she spoke her very first word- Book! Not only were her seizures reduced but she was more vocal than ever before! Since then It has helped her personality emerge immensely.
After school began we returned to Georgia to continue helping change the laws in our home state. Not only do I help parents and patients navigate the current laws and resources but I also teach them how to make medicine, as CBD is not enough for some patients. These patients go by the mantra “I’d rather be healed illegally, than die legally” We are still working to change state and Federal laws, in fact next session we hope to add even more conditions to the bill as well as cultivation.
As Victoria has had a great seizure reduction due to utilizing medical marijuana, from 50 seizures a day down to 1 or two per day, It has really pushed me to help others achieve the same success and or at the very least have an attempt at a better quality of life. Cannabis is not cookie cutter and currently patients seem to know more about medical marijuana than our doctors.
I proudly wear my Georgia’s HOPE shirt and on the back, it states: Cannabis oil can heal. Recently, I ran in a local breast cancer awareness 5K, I had people coming up to me and asking for more information. Also, we were selected by Make -A- Wish and of course I wore the same shirt on our Disney cruise, which resulted in people from all over the world inquiring for more details. This lead me want to do more and affect positive change, so now I admin several cannabis related Facebook groups like CBD 4 Epilepsy, Cannabis 411, Georgia’s Hope. Soon, I hope to develop a Cannabis Law Enforcement training guide so that we can get our law enforcement officers on the same page as our patients.
Currently, I am advising low income patients who are also registered Georgia Low THC card holders how to access free cannabis oil, through Rep. Allen Peake.
Follow our Facebook page called: Georgia’s Hope for the latest news regarding Georgia’s medical marijuana laws and you can follow Victoria’s personal journey with cannabis oil at Paws for a princess.