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.