We welcomed our sweet Jillian Faith Earthside in June of 2005. Since that day, our journey has been much different than we ever imagined. Hours after birth Jilli began having seizures, and by the time she was a month old she was having 40 to 50 seizures every day. Many tests, EEG’s, MRI’s, and consultations with specialists never brought us any answers, and prescription anticonvulsants never brought her any relief. We watched helplessly as our tiny girl was taken over by these violent, and heart wrenching seizures. There was nothing we could do, only comfort her as she screamed out in fear after each one. Absolutely the hardest thing I have ever faced as a parent, unable to help the one who needed me the most.
As time passed, the seizures continued as we tried to navigate this new world of doctors, and needles, and of a fear that we had never known. We realized that she was not reaching any typical milestones, and at 6 months old we were told that she had Spastic Quadriplegic Cerebral Palsy. She began Physical, Speech, and Occupational Therapies, which she still continues with today. More new things in our world…learning our new “normal.”
None of the medications ever helped us achieve seizure control. So, we continued month after month, day after day…watching helplessly. Every day as I watched her endure the seizures, I would think to myself…”there has to be something that can help her”. I studied, I researched, I made phone calls, I met with specialists…nothing. Nothing ever worked for her.
As I learned what these seizures do to her little body, how hard they are on her muscles, and how damaging they can be to her brain, my desire to find an answer only grew stronger. One of her Neurologists told me that her brain was so busy having seizures, it didn’t have time to learn or do anything else. Unacceptable. As she has grown the Cerebral Palsy has begun to take it’s toll on her little body. She suffers from spastisity in her muscles, which causes her great discomfort. She has to wear leg braces to keep her feet from turning in, and a wrist brace to hold her hand in the correct position. There are nights that she is having so much discomfort that she stays awake all night from her pain…and all I can do is hold her. Other nights are filled with seizures and restlessness. No child should ever have to face these things. Ever.
As my search for answers continued, a dear friend sent me an article last year about a little girl in Colorado finding seizure relief from the oil of the Cannabis plant. I wasn’t quite sure what to think…pretty touchy topic, giving kids any kind of marijuana. But, I was intrigued…so I kept researching. What I discovered was amazing. Story after story of kids seeing amazing success with cannabis. Ever since then, our family has been fighting to get to colorado. This past year was very difficult on many levels, but we still continue to fight for Jilli to be able to have access to cannabis as medicine. Wether that means relocating, or fighting for legalization in our home state. Jilli, and so many like her, deserve a chance at a better quality of life. We will continue to link arms and fight for them until they have what they deserve.