You wrote us an anonymous email. You said that our views on medical marijuana are “disturbing and disgusting.” You also added some other things about how God will judge us soon, but that disturbing and disgusting part…that hurt the most.
I just wanted to say thank you.
1. Thank you for cementing my resolve that I would do anything to help my daughter. I give her medical marijuana through her feeding tube three times a day. It is a strain that is high in Cannabidiol (CBD), low in THC so she does not experience the high that is usually associated with the drug. Since we started it a year and a half ago, her seizures have been reduced by 75%. This is after 7 years of watching her seize every day. After trying 10 different anti-epileptic drugs without great success. Imagine lots of tears and sleepless nights mixed in. Do I have one regret about medical marijuana? Not one. Would I run through a glass door if they said that would stop her seizures? Absolutely. Thinking about what could possibly be disturbing or disgusting about finding a treatment that finally works has solidified my determination that I will do whatever it takes. No matter the cost, no matter the ridicule, I will do my best for my child. Aicardi Syndrome has already taken too much from her. She deserves to have parents who will do whatever they can to give her the best life possible.
2. Thank you for teaching me to stop the never-ending judgment reel in my mind. Each one of us has a constant line of judgments running in our minds. Well, I assume you do too. She shouldn’t be wearing that. How can they afford that car? She is rude. He is driving too slow. Their kids are out of control. That guy talks too much. It is always running…unless we consciously stop it. We have to renew our own minds. Our minds will go there on autopilot unless we decide not to let them. Because I was so mad at you for assuming you know what we have been through, I realized that I too have no way to know the road each of these people has trudged to get this point, on this day, where I am judging them. I will renew my mind when that judgment reel starts playing and will choose to focus on the things in my own life that need refining before determining things that need to change in others, especially those about which I do not know the full story. Which is probably most things.
3. Thank you for reminding me to be careful with my words. Words have power. They can either breathe life into another. Or they can suck it out. There are very few neutral words. I had several days taken from me because of your anonymous words. You probably have not thought of me again. Words have power. I want to use them carefully.
4. Thank you for teaching me the importance of saying “me too” as often as I can. When I read your email, my first ache what that of feeling alone. You may not know this. Parenting a very rare child can be lonely and isolating. In this case, all I could hear was…yep, you are the only one dealing with this. And everyone thinks you are disturbing and disgusting. She is just the only one willing to say it. Have you been there? I really needed to hear someone say, as author Brene Brown says, “the two most powerful words when we are in struggle, 'me too.'” Showing up, coming alongside and just saying “me too” can heal lots of wounds.
So to you, the author of the email, I say thanks. Thank you for making me stronger. Thank you for making me kinder, I hope. Thank you for making me gentler, I pray. Thank you for making me more aware of the need for “me too.”
You probably thought I’d fire back. But the beauty of raising a medically fragile child is…you get strong and with that, you learn to endure pain and keep moving forward. Onward, with more grace and love, hopefully for us all.