3 years 5 months and 11 days ago Sam and I made the "controversial" decision to start our then 7-month-old baby Sonzee on her first dose of CBD oil. I remember giving her the oil via a dropper into her mouth under her tongue a couple of times a day, and especially while she slept. I remember the fear of dosing her incorrectly, the initial skepticism over whether it would work, and the curiosity of whether it would actually work for her. I remember being cautiously optimistic, but at the same time, there was a very large part of me waiting behind the scenes to pull the cord that sent the room into a full-blown celebration when it would be the answer, HER answer. I remember the initial feeling of defeat when that was not the outcome, HER outcome.
Over the course of 2 years, she would try multiple brands of oils, pastes, and types. After each unsuccessful attempt, we were hit with mixed emotions. Was it the brands we were choosing? Was it the dosing? Was it the type? Was it an allergy to the carrier oil/base? We felt disappointed because we felt surrounded by so many success stories, why couldn't she be one of them? In my dreams, I planned on purchasing a billboard to join the bandwagon of spreading how medical marijuana was medicine, how it really does work, and how much better it is than pharmaceuticals. Yet every time we found ourselves let down, trying to rationalize why it didn't work. Then someone would share their success with another brand and we would talk ourselves into trying it again.
For the majority of 2018 we said we were done with any CBD oil, but then Epidiolex came to the market. The jury was inconsistent even among kiddos with CDKL5, but it seemed again the vast majority who were on the trials had amazing success, so naturally we had to try it. The day the FDA approved doctors for prescribing Epdiolex was the day Sonzee's epileptologist wrote the script. With eagerness and anticipation, she too was curious and excited to see how Sonzee would do, we were her first patient to finally get it and start it in December. As usual, I didn't allow my mind to run too far off into the land of CDKL5 miracles, but I definitely put more than one egg into the basket. Which is why my heart is hurting and feeling a heavy-weight as we are in the process of weaning what was her "hail mary".
I wish I could convey in words to those of you not parenting a child with refractory epilepsy exactly how it feels to know there is absolutely nothing you can give your child that will ever stop her seizures. I wish I could express the heavy-weight mixed with airlessness that resides in my chest over the fact that nothing will ever work, but yet we are incapable of not trying more cocktails, more useless combinations of pharmaceuticals, or potential new hail mary's that will pop up along the way. I wish I could adequately explain the pain and suffocation that never goes away because as long as she is alive she is suffering multiple times a day for 10+ minutes each time and there is nothing we can do for her. Nothing exists to correct the awfulness that ONE little misspelling on ONE gene has caused.
Sadly, our chapter with CBD is coming to an end. Part of me doesn't want to believe that, and the other part of me says "just let it go." It has nothing to do with her age, with the brand, with the dosing, with type, and/or with the base. It is just like every other epileptic medicine (natural or not) that works for some and doesn't for others. Even though we have been down this path before with so many medications, breaking up doesn't get any easier. We will eventually get over this loss, it will take us some time for us to allow ourselves to believe something out there will work. But eventually the disappointment won't feel as fresh and the optimism (while never as high as it once started) will slowly build its way back up, and no matter how many more times we will inevitably find ourselves traveling down the same exact path, we will do it with a smile. Because, as Albert Einstein said, "Life is like riding a bicycle. To keep your balance you must keep moving."