This isn’t the letter you’re probably expecting to read, but let’s be honest, I don’t think anyone expects to become a soldier in the war on drugs. No one plans or prepares to have to wake up everyday, lace up theoretical combat boots, and fight. It is doubtful, five and six year olds are playing with their classmates and dreaming of fighting prohibition. I know I wasn’t. I can remember my girls size 12 running shoes pounding on the black top as whisps of my hair flew behind me. Running from a 20 foot dragon ready to scorch me with fire who went by the name of Whitney and sat next to me during social studies. I was just like any other child, not a worry in the world. As I grew I had hopes and dreams of a family and providing for my own daughters a beautiful childhood filled with all the joy and happiness that I experienced. These hopes and dreams were all shattered in a matter of minutes when I received a phone call, just two days before my eldest daughter Madeline’s first birthday that changed my life forever. Four words. One diagnosis. She has Zellweger Syndrome.
There is no cure or course of treatment. Most children do not survive past their first year of life. There is no book, no amount of advice, or any sort of step-by-step plan that can prepare you for this type of diagnosis. In a matter of minutes, the hopes you once had for your child, their first steps, their high school graduation, and every other dream of their future you had begun to create in your mind are not only shattered, but are replaced by therapy appointments, adaptive equipment, and end of life plans. You quickly become an outsider. An individual the world sees as having immense strength when on most days the truth is, you feel as though you are just barely reaching the surface, catching breaths while you can and trying not to let the grief, fear, sadness, and countless other ups, downs, and sideways emotions that consume a special needs parent on any given day outside of yourself because your strength is not a choice. Just like my choice to always fight for Madeline. From the moment she was diagnosed I promised her and myself that I would always fight for her. That I would do whatever it took to ensure she was happy, coherent, and able to enjoy as much of the world while she is here. Maddie is five years old and I have kept my promise her entire life. Three years ago, in April of 2015, my fight for her reached another level. After being placed on 26 pharmaceuticals, admitted into hospice, and told there were no more medical options, I found one last hope. My intentions were grim in the early days of treating her. My only expectation of the dark green molasses was to allow me to hold her during those final moments and not have her convulsing out of control. To be able to kiss my daughter on the forehead and rock her to sleep for the last time, reading her Nancy Tillman’s It’s Time to Sleep, My Love. Not only has whole plant cannabis drastically altered her seizures, gotten her off of hospice, and allowed her to wean off of 23 pharmaceuticals, but it is providing her a quality of life neither her medical team nor I thought was possible. A life where she can be happy, coherent, and pain free. Typically, this is the happy ending you read at the end of an uplifting post or blog, but Maddie’s journey has only just begun. Cannabis is the beginning of a new layer to the endless things we must fight for. The constant struggle to show, teach, and educate the world about human rights for all people. The struggle to show the world that Maddie is just a child, and like all children wants to explore the world without being criminalized. You will never see thousands of people running to stand up for a wheelchair bound child who is non-verbal, a laundry list of medical complications, and who has inadvertently become a victim of the war on drugs after becoming addicted to opiates. Then when she weans off of said opiates with THC, must re-lace her theoretical combat boots and head back into battle to fight for the plant that is saving her. For little Maddie, it’s a fight for her life. Everyday.
By Meagan Holt