A few months into Addie’s seizures, my friend Bridget called and said, “You may think this is kinda odd--but have you considered medical marijuana?” My stomach dropped. I replied, “Oh no!--that will be just my luck that that will be the only thing that works. I’ve had to humble myself on everything else! ” So munchy, munchy humble pie! Thank you to Bridget for planting the seed that grew into our last hope!
At Primary’s, after Addie failed 7/14 seizure medications, the neurologists told me that Addie qualified to use cannabis when I finally got up the courage to ask. In the state of Utah, 1) if your seizures continue after trying at least three medications, 2) you receive a letter of recommendation/documentation sent to the State from the neurologist, 3) you fill out an application, and 4) you submit a $200 fee, then you can receive a “Hemp Card” that authorizes you to use medical marijuana for one year. After that year, you continue to pay $50/year to keep your Hemp Card active & if you let it expire? $200 again! Additionally, you must keep a laboratory analysis of the hemp product you are using to confirm that the medicine falls into the strict guidelines for CBD to THC (medicinal vs. psychoactive parts, respectively) ratios in medical marijuana.
The price for a 1 oz bottle of Hemp Oil ranges from $35-150. The pricing and fees nearly scared me off from attempting it--the neurologist didn’t seem that confident that it would work for Addie. A friend, whose child has seizures, however, offered me a sample to test on Addie. I placed the sample on my desk and “ignored” it for two days. I felt so afraid of trying it only to have the neurologist’s predictions verified--that it wouldn’t help her. I didn’t know if I could face my last thread of hope taking flight.
Finally, after days of watching my baby seize, we decided to try it. I held Addie in my arms and uttered a prayer toward heaven as Chris dipped his finger in the sample and rubbed it on Addie’s gums. Within seconds, Addie’s rolling eyes stopped, centered, and focused on my face. She made a cooing sound and a giggling sound. For the first time she seemed like a real baby--a healthy baby. She was there--in my arms--her body and spirit connected and present. I just wept. She stayed with us for about 40 minutes before the seizures began to take over again & she fled. I felt so much awe and humility.
After complying with State laws, we started Addie on a beginning dose of CBD oil last Friday. At the end of week one, her eyes have mostly stayed centered, she’s gained more rigidity in her limbs (instead of floppiness), her seizures have nnoticeably decreased, and she’s been very sleepy--restful sleep. We are only on a beginning dose and we have a long way to move up the scale in hopes of finding a ‘sweet-spot’ where we’re hoping the seizures will perhaps disappear altogether! Prayers ascending!!
So back to my dish of Humble Pie! I remember driving in my car last year listening to a debate on medical marijuana on talk radio and saying aloud: “Give them an inch and they’ll take a mile!” I mentally entrenched myself against any legislation on marijuana in Utah. I never researched it. I acted completely out of prejudice and ignorance. And, while I never spoke publicly regarding this issue, I’m publicly apologizing. I’m sorry that I never even considered the opposing side to the argument, and I’m sorry for my ignorance and callousness to the intense suffering of so many parents as they stood helpless over the seizing children with no options except TERRIBLE seizure medications. Finally, I’m committing to never speak on any issue again until I’ve heard both sides and actually researched it!
I stand on the shoulders of so many here in this state who pushed for this option for people. I feel intense gratitude and humility once again that I have access to this medicine without having to pack up and move to Colorado. Parents waited YEARS for this option, and I only had to wait a few weeks to receive authorization from Neurology. Epileptic children marched ever more toward physical and mental disability, increasingly addicted to ridiculously harmful seizure meds, as their parents persistently marched on Capitol Hill to get access to medical marijuana in Utah. I am undeserving of my blessings. Because of their efforts, Addie has a chance to get control of her seizures, wean off her brutal seizure meds, and progress toward more normalcy. I’m humbled to my core.
As this legislative session is upon us nationally and in our states, I hope you’ll share my experience with people so that only I have to swallow humble pie.
Lastly (and Firstly), I acknowledge the Creator who truly did fill the earth with “excellent qualities of the many plants and roots which God had prepared to remove the cause of diseases, to which men were subject” Alma 46:40 . His name be ever praised as the Mighty Healer and Great Physician.
--Desi
