This blog is dedicated to life with cannabis.
I have been married since 1995 and we have three kids. We live together in our home is suburban America.
In January 2008, our third child was born.
She was what completed our family. Shortly after her birth, (actually, the same day she got her first set of vaccinations at 6 weeks old) something changed. She began to cry and never stopped.
Over the next year, there were many milestones that were not being achieved and we knew that there was something was wrong with her development. So, we started seeing endless specialist to find some answers so we could “fix it”.
In April 2009, we started noticing some abnormal movements and our deepest fears were confirmed. Maya was having seizures.
Not just a couple a month, but hundreds of absent seizures day.
Our next few years were a blur of specialists, therapists and paperwork. We were ignoring our older kids as we could only focus on getting our little one’s heath in order.
When we realized that Maya's development was going to different and challenging, it shattered a lot of our dreams. It changed our future forever. I resigned from my teaching career of 15 years in September 2010. I worked half my life either taking college courses to become a teacher or being a teacher.
Teacher was part of who I was.
Teacher was part of my identity.
It was one of hardest things I ever had to walk away from.
Seizures stole my career from me.
I felt like part of who I was, died.
Abnormal became our new normal. None of the conventional medications were working well for Maya. She was just existing and she was honestly struggling. She cried……. A lot.
We eventually found out that Maya has a very rare genetic disorder called DYN C1H1. The mutation is on the 14th chromosome. This mutation causes missing pieces of proteins in her neurons essential for neuron duplication, growth, repair and sustainability. As a result, she has epilepsy, neuropathy and deep tissue nerve pain. She is non-verbal and non-ambulatory.
In 2013, my mom told me that she saw on the news that marijuana has helped people with seizures….That’s where my cannabis journey began.
I immediately started doing research, like 24/7, finding any information I could. I found enough evidence to be convinced that Maya needed to try the medication….Cannabis.
In 2014, There was a bill introduced in the NYS legislator to legalized medical marijuana. Once I found out, I immediately got on board. I met with several local law makers and traveled to Albany to tell our story. The Compassionate Care Act was passed and signed into law July 5, 2014.
She started using cannabis, and her life began to change. She was more alert, stopped crying and most importantly, her seizures began to lessen. Eventually, we found a formulation of an anti-epileptic drug and cannabis that made her seizures stop.
Maya is this little person that just showed up in my life and changed my heart. Her spirit has been planted deep with my soul. She truly has shown me what unconditional love means. There are no strings attached, she has no expectations to meet, it's just simple, pure love. This is why we choose joy even on our worst days.
Cannabis is the medicine that has given Maya a life the seizures have stolen from her.
I owe Maya every ounce of fight I have.
This blog is dedicated to the challenges and triumphs through this journey of a raising a special needs child and how cannabis has saved her life.
This journey is NOT over for us…..