We all have one life in this world. When you die, there are restarts, no extra lives, no reset button. It is terminal. A healthy individual will grow up reaching milestones, accomplishing goals, and have the choice to create their future. Life may be full of ups and downs for that person but their actions are their own. They have the freedom to choose their path. What a great feeling that must be. I have been lucky enough to experience some of these freedoms and choices. Well to a degree. My freedom and choices stopped when we had a sick child. Well not one but two. Some of the choices we have had to make were not something I would have to wish upon anyone. Here are just some of the tough decisions we had to make for our kids:
- Which wheelchair to get, what color, and what options?
- Experimental medications and enrolling in trials for seizure control
- Surgery for a 1 year old to add a VNS the size of a hockey puck in their chest
- Should we put our child through a 12 hour back surgery
- Feeding tube: do we get one or risk the child aspirating
- Do we sign the DNR/DNI sealing our child fate if their heart or lungs stop
Each one of these decisions were extremely difficult but had to be done on behalf of another living person. Not "normal parenting " decisions but those which keeps their child alive. For those parents who have special needs children. these decisions are done daily. None of them could have anticipated that this lifestyle was what their future holds. They had the hopes and dreams for their children. As time passes, the developmental delays get more predominant as milestones are not met. It is gut-wrenching to watch, yet every parent clings to hope that someday something will help.
Now, it took YEARS for me to come to grip with my children's reality. I lost time I can never get back really enjoying my children. Kind of hard when you spend so many weeks in the hospital or days off taking the kids to doctor appointments- and there were tons of them! The greatest thing that came out of these kids were the families I have met. If it weren't for the kids I never would have met some incredible people. My best friends Jan and Jason have become closer than my family on a totally different level. We would never have met them if not for my sick children. I would not have been so passionate for people and humanity. I would not be here today fighting for all those sick. I would not be fighting for a change in marijuana laws for everyone in the world. I have found my calling and as a pharmacist, "I will embrace and advocate changes that improve patient care." My Pharmacist Oath forever commits me to change things that I know aren't right despite the obstacles in front of me.
I will climb that mountain, surpass that hurdle, and take on any adversity to achieve what is right for them, what is right for everybody. Why? The most fail children, who cannot walk or talk or feed themselves have not given up on me or my wife. and given us strength and courage. They have endured multiple surgeries, blood draws, medications that could kill horse and survived. They have shown us what what unconditional love is. Simple and pure.
So, where do I stand on marijuana? REFORM NEEDS TO HAPPEN NOW! I cannot listen to another politician telling me that we don't know the long term effects, or more research needs to be conducted, or the Federal government saying it is a schedule I controlled substance. Questions and comments I have are:
- what is the damage being done to a child's brain from constantly seizing- risk vs. benefit,
- Conduct the research while accessibility is there. Multiple states have recreational use already. Conduct as an open label study. in willing participants.
- The Federal Controlled Substance Act is from the 1970's. It needs to be re-examined, reviewed and changed, (FYI marijuana was to only be a temporary classified as a schedule I controlled substance)
THESE PATIENTS ARE SICK! Shouldn't the providers be determining what course of medical therapy is best for THEIR patient? The patients don't have the time to wait. Cannabis has been used for 1000's of years. It is probably one of the first medical products ever used, least amount of side effects, and probably one of the safest.
I don't want to hear about side deals and profits for companies. I WANT access for everyone now! By the time regulations are changed, how many will have suffered and how many will have died. Time is being wasted and it will not do any good when someone is 6 feet under. Live is precious! Don't waste it!