Auld Lang Syne (and stuff)

As long as I have been able to write (starting way back with my pink Hello Kitty diary) I have kept a personal pen-and-paper (and sometimes paint and colored pencils and glue) journal. Writing has always been a way for me to decompress, allowing me to work through the things in my life that trouble me--my worries, my fears. As the volumes have grown in number over the years, I have found that journaling has also served to mark my own personal progress and growth, creating a sort of record of the lessons that my life has taught--and continues to teach--me. It's all there--the stuff I'm proud of, and some other stuff, well, not so much. Even if I am not paying attention to those lessons in the present, they almost always present themselves to me, loud and clear, in the pages of my journals as I look back on them.

For the past several years, I have made it an annual end-of-the-year practice to flip back through my journal from the past year to review my journey. I realized recently that at some point, I had completely forgotten the guide word I had chosen for myself for 2014. As I thumbed through last year's pages in search of it, I stumbled across an entry that I had written on January 31, 2014 that, upon rereading, I thought might be worthy of sharing in this space.

This journal entry is obviously very personal to me, but it's the best and truest way I can think of to share with you how this whole Colorado/medical cannabis journey began.


Friday 1.31.14

I'm so worn out. I'm having trouble focusing on much except for the worries that keep popping up, and the mantra--so unhelpful--that keeps running through my head:
                   
                    I'm so tired.
                    I am SO tired.
                    I. AM SO. TIRED.

I cry. I worry that there is truly nothing to be done to heal Otis. That we're going to lose him in childhood. That is a very real and very terrifying fear to me. I become anxious just from being away from him, even for short periods. I worry about some crazy childhood protection people catching whiff of our Colorado plans and stepping in to take Otis away from us, to send us to jail. I am angry and frustrated with the lawmakers in this godforsaken state. After just two (long, exhausting) days of meeting with Kansas legislators, I am wondering if it isn't best for us to just get the hell out of here and never look back. What if O's seizures are controlled by the mmj, but at the risk of losing all the great services and the care team he has here in Kansas? 

I realize I'm jumping all over the place here, but this is what I really want to be able to say to those legislators:

Just imagine, if you can, being in our shoes. As a parent, imagine being told by your child's doctors that they have tried nearly everything, that there is next to nothing left to be done to heal your child. Imagine the fear and the desperation you would feel. 

Imagine what it is like to sit up with your child, at midnight, 2 a.m., 4 a.m., holding him close to you, helpless as he seizes over and over and OVER  again. Crying, praying, cursing God, whispering, hushing, and singing to your child between your own barely contained sobs. 

Think about what you would do, having exhausted all available medical options. Who would YOU turn to for help? Or would you just throw your hands up, toss in the towel and give up? No, you wouldn't. Of course you wouldn't. 

I'll tell you what you would do:  

You would continue to fight for your child, endlessly, relentlessly, through fear and anger and sorrow and exhaustion, doing everything and anything possible, pursuing ANYTHING that offers the slightest possibility of relief for your child. Because if WE don't fight for our children, who will? Certainly not our state's lawmakers. That has become very very apparent. 

It is infuriating that the individuals with the most power and the most influence to DO SOMETHING refuse to even see us or hear our story. 

Cowards. 


While we do occasionally pop in to share scattered details of Otis's developmental progress on this blog, we haven't written much about his seizures or our cannabis/CBD/Charlotte's Web journey in the nearly 8 months that we've been here in Colorado. My intention is to do a better job of that in the coming year. What I really want in this new year is for us to try to step out of our usual survival mode, and to be more mindful of the details (the whole spectrum, from blissful to devastating) of our life--both in the living and the sharing of it. I want to try to help our friends and family understand the full picture of this journey, or at least as much as I can. Some things, of course, are just unbloggable. 

Oh, and the 2014 word? It was faith.