Mixed Emotions

Ok, so tonight as I sit up late with Rayleigh, I have some things to get off my chest. This post is not necessarily about Rayleigh. It is about me. Her mom, the mom of a special needs child, the mom of a daughter who seizes every day, the mom who must move to an entirely new state to get her child the medical treatment she needs. 

I must admit, I'm not in the best of places tonight. I have been extremely stressed the last few weeks. When we first made the decision to move our little family to Colorado and try medical cannabis oil it was bittersweet. I can tell you that part of me was excited to get there and start this new adventure! A new home (smaller yes, but I prefer to think quaint), new friends, new things to do and see, change. 

Of course, missing family was and still is the forefront of our woes about moving. We are tight-knit and they are very involved in Rayleigh's care.

That woe is followed by establishing a new team for Rayleigh in Colorado. Y'all might not understand, but we LOVE her team right now. Her pediatrician, her specialists, her therapists, and her school. Oh, her school feels irreplaceable today. I talk to her teacher and the aide every day for just a few mins to discuss Bug's day and how she's doing. I have both of their cell phone numbers, I can contact them any time I need to and I feel so confidant knowing they are qualified to take care of Rayleigh while I'm away and that they are happy to have that time with her, and the other students of course! I pretty much the same feeling about Bug's pediatrician, she is so wonderful and calls to check in between appointments and always remembers what's going on with Rayleigh! The entire team genuinely cares for Rayleigh and I'm terrified that we may never get that again. 

There are undoubtedly positives to moving. I mean, it's not like we're moving to some terrible place! Colorado is beautiful, I've always loved that state. There are several welcoming families that we will meet and bond with and lean on in times of need. And of course, the state has the medical cannabis oil that Rayleigh needs. More great things: My very dear friend and her daughter (Rayleigh's very dear friend) already made the move to Colorado so we will be close again! AND big news y'all: 
Rayleigh's pediatric neurologist is moving to Colorado!!!

This is huge! Rayleigh has seen this neuro since the beginning, the first EEG, the first medicine, every hospital stay, every test, every seizure type. It's gotta be kismet. He is not moving there for anything related to medical cannabis, he got a teaching job there and will have a small practice, too. 

But still, it is difficult. Michael and I, and Rayleigh, all have so many friends here. I know, I know, we can make new friends, but that doesn't mean that we are happy to move away from the friends we have made here. 

I think I'm starting to sound petty. I'm just frustrated. The state of Oklahoma is letting me down. I have always LOVED the great state of Oklahoma! The people are strong and loving. But it's hard to feel that love when the legislators here are not willing to do anything to get my daughter the medical cannabis oil she needs. 

Maybe that's where a lot of this is coming from. Maybe this is some sort of "acceptance" period. Accepting that there is nothing I can do to change the laws in Oklahoma, not in a timely manner that would save Rayleigh. 
Accepting that the oil we need is not available in this state, causing us to move. Accepting that this doesn't have to be permanent.
Accepting that it might have to be and I have little to no control over that.
Accepting that the Federal Government of the United States is in no rush to legalize medical cannabis. 
Accepting that we are moving to Colorado. 

All of my sadness aside, I am excited to be in a state that provides better opportunities for special needs families. Nursing is very difficult to get here in Oklahoma. In fact, we were denied and in the process of appealing before we made the decision to move. Rayleigh, denied a nurse. But that really could be an entire post on it's own. Nursing is more readily provided in Colorado. Also, Medicaid programs and waivers seem to go into effect quicker (we did paperwork for a year before getting approved here, there it is around 3 months at most).

At the end of the day it boils down to this, we are moving because it is necessary for Rayleigh. We will make the best of the situation like we always try to do. 

We will miss our family, friends, and Rayleigh's team so dearly it hurts.

Thank you for your support.

Thank You for Your Support

We recently did an interview with Dana from our local News 9!! Here's the segment that aired:

News9.com - Oklahoma City, OK - News, Weather, Video and Sports |

Since the segment aired we have had friends and family asking how they can contribute and help us get Rayleigh to Colorado and start the Charlotte's Web Realm Oil quickly. 

This led me to create a t-shirt fundraiser! 

The purple ribbon on the front represents Epilepsy Awareness

The support we receive through this fundraiser will help us cover the cost of moving, the Charlotte's Web Realm Oil which we have to pay fully out-of-pocket each month, and Rayleigh's medical expenses that will not be covered by Medicaid for a few months while we transition and re-apply in Colorado. 

We appreciate every single one of you for cheering on our girl through her journey!

Thank you!

Putting My Hope in Cannabis

Honestly, I don't know how to summarize everything on my mind into one blog post but I'll do my best to keep this short and simple and to the point.

Medical cannabis, Charlotte's Web in particular, is not only stopping seizures but it also healing the brain! And the kicker, Charlotte's Web does not get the patient high.

I grew up sheltered. I was a good kid that followed the rules. So I would have thought I'd be the last person giving my almost-4 year old daughter marijuana. That was before I learned the facts about cannabis. When your child is seizing every day and losing all of her motor skills and has so much brain damage from the seizures that she can't progress developmentally, you start to think outside of the box that the doctors keep you in.

Rayleigh has tried 11 anti-epileptic medications, the Ketogenic Diet, and has the Vagus Nerve Stimulator. None of these have given her seizure control past a honeymoon phase. But Charlotte's Web can give Rayleigh some relief! This natural plant that the Stanley Brothers have bred could be our answered prayer! CBD is the most medically beneficial component of the plant as has anti-epileptic properties and is a neuroprotectant.Charlotte's Web is very high in CBD and contains some of all components from the medical cannabis plant including a very small amount of THC (the psychoactive part of the plant), enough to help but not enough to get a child high. Here's a chart showing the benefits medical cannabis provides:

From Full Spectrum Labs

Rather than type out all of the facts I have learned, I'll just share some of my favorite videos about Charlotte's Web and medical cannabis benefits are below:






And of course the documentary by Dr. Gupta that got the whole country interested:


The results are AMAZING but Charlotte's Web is medical cannabis, and cannabis of any kind is illegal in Oklahoma, no matter how minute the levels of THC are. Because of the laws here, we will have to move to Colorado for treatment. And soon.

Moving a special needs family is not easy, y'all. We have to start by transferring her daddy's job, then switching insurance and benefits and needless to say we will have to find a new pediatrician, neurologist, epileptologist, GI doctor, neuro-opthomologist and PT/OT/Speech/Vision therapies. And leave behind family, friends and support that cannot ever be replaced in our hearts.

There is a meeting at the State Capitol on February 12th. I will post more on this issue then. For us personally, we are looking at moving to Colorado within the next 6 months to get Rayleigh started on Charlotte's Web ASAP and would like to be able to move back when it is legalized in Oklahoma. We shouldn't have to move away from everything and everyone for our daughter to receive medical treatment. 

I'll leave you now with the (paraphrased) words from a dear friend when we first met with some Oklahoma representatives at the State Capitol in October, "There is a plant, a plant that is all natural and can heal my child and save her life, a plant growing 8 hours away that I am NOT ALLOWED to give my child because of where we live!" - Hilary