[Update: Judson Hill stepped down from the state senate in 2017 to run for the the seat left empty by Tom Price, who accepted a role in Donald Trump’s administration. Please read this if you are considering voting for him]
Dear Senator Judson Hill,
I am shaking with anger right now. The Georgia Senate just voted moments ago on HB 885, the medical cannabis bill. As it was discussed, my son’s 12-day seizure free streak ended at my feet. The bill passed 54-0. Two people didn’t vote. Where were you?
You have constituents that have tried to reach you for months. You have blown us off. You have tweeted and posted about your work on on SB 98, a bill to prevent healthcare plans from funding abortions. But you are silent on two bills that help children who have already been born. Two bills to benefit children: one bill to make insurance companies provide coverage to children who need therapy due to an autism diagnosis and another to help parents obtain a medicine that could help children with severe seizure disorders, and you did not vote on either. Why? Clearly, you have constituents that want to be represented. Perhaps I’m outnumbered? Maybe you heard from more people that didn’t want you to support these measures than did support. In that case, you didn’t represent them either.
I first e-mailed you on January 9. I did not hear from you, but given that the bill started in the House, I figured there was time, and that I’d hear from you when it became a Senate issue.
I e-mailed you again on January 31.
And February 6.
And February 24 in regards to SB397–the autism bill you didn’t vote on.
And March 7. Twice.
And March 11.
Plus an e-mail from my husband.
On February 5 we had a scheduled face-to-face meeting. I came down to the Gold Dome with my son and arrived at your office at the scheduled time. You were not there. You had not come in yet that day. No one could tell me when you would arrive.
On March 10, I attended your town hall meeting that you scheduled. You did not show up.
I tweeted you on several occasions:
March 8
and March 11
and March 13
and March 19. Twice.
I have never received any response from you whatsoever. I do not know of anyone in the district that has, and I won’t even get into how many times you’ve been contacted by others I have talked to. My efforts to reach you pale in comparison to the efforts of another nearby family who has a far more dire situation.
I guess you can afford to treat your constituents that way when you are unopposed.
But someday you won’t be, and I can’t wait. I will be there and I will be vocal.
Sincerely,
One of your many irrelevant constituents
Update:
I finally sorta kinda made contact with Judson two years after I posted this letter. Apparently, the key to getting his attention is his wife. Rep. Allen Peake had posted on his public page about his disappointment in the failure of the 2016 Georgia legislature to expand medical cannabis. Senator Hill’s wife commented and the following thread resulted on that post.
I refrained from pointing out that the family he spent time with was the one that received the most press this year.
But this is how he handles “problem” constituents.
For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy. Probably more astonishing to some (including my family and close friends), I even can write! Although let me start by saying I don’t write nearly as well as my wife.
Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!). I also want to thank the little man himself, Connor. He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.
Now on to the reason for my first foray into blogging — a certain state representative here in Georgia. As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving. It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side. He did this knowing it was going to be a tough fight and one that could potentially end his political career. It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do! I applaud you sir!!! I only wish we had more like you at every level of government.
But that isn’t the representative I came to write about. I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences). Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”. Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year. I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard. Since when do those who elected a new member to represent them suddenly not have a voice? To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.” Maybe that is how I can get access to my state senator?
Okay, so maybe I got to a few items, just not in the detail I could have.
No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43. I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow! Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome). I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving. In my humble opinion she has actually been trying to kill the bill behind the scenes. I will get to that in a moment. Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things. Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented). No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks). My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”. I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue. We should not have to ask that they vote accurately though so we can actually make an informed decision during elections. We deserve that much!
Now you may ask, “How was she trying to kill the bill?” Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it. I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place. Let’s also not forget that her position on some items is ever changing. Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example. At her committee meeting there was testimony by a woman — a family values advocate, not a doctor –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process. So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie. She would correct that in later speeches and comments though. She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta. Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting. Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist. She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.
Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal. Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines). Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future). She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again). What do these parents and adults do in the meantime? Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions. Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns. Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few. Or that there have been FDA-approved drugs that have then been recalled.
I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out. Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there. Again, this is about her shady politics, though. This is what the general public has grown sick of in America. We expect our politicians to act in a better manner. I only wish I lived in her district to run against her. In Georgia though, we are sort of set-up where the common man can’t run. We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay. As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off. And how I would love to run against our state senator so that everyone in our district could be heard and represented. I deserve to be heard and represented; we all deserve to be heard and represented!
Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.
Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him. But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.
HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.
Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.
Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.
Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.
If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.
So much excitement over the last couple weeks. Where to begin…
HB885 passed the House vote 171 to 4. It now awaits a hearing in the Senate. If you haven’t yet contacted your Georgia state senator, please do so right away. If you aren’t sure who it is, check here.
Chris and I flew up to Washington, D.C. last week to meet with our representatives about the continuation of funding for the Tuberous Sclerosis Complex Research Program (TSCRP) which is part of the Congressionally Directed Medical Research Program (CDMRP) in the Department of Defense (DOD). Yes, I am drowning in a sea of acronyms. Quick quiz: how many of these acronyms do you know?
(Answers: angiomyolipoma, tuberous sclerosis complex, subependymal giant cell astrocytoma, lymphangioleiomyomatosis, subependymal nodules, cannabidiol, Charlotte’s Webb, Food and Drug Administration, Tetrahydrocannabinol, Drug Enforcement Agency, Realm of Caring, vagus nerve stimulator, complex-partial seizures, tonic-clonics, this is the name of a pharma company (I actually have no idea what GW stands for), investigational new drug, lennox-gastaut syndrome, Health Insurance Premium Payment Program, Katie Beckett, Children’s Healthcare of Atlanta, physical therapy, speech-language pathologist, music therapist-board certified, modified Atkins diet).
That fact that I know those in no way makes me smart. It just means I can do even less math than before because I’ve had to drop everything number-related dating back to second grade to make room for it all. To be honest, that only equates to a couple of years. It was all downhill from fourth. Also, don’t ask me to pronounce most of them.
Now back to DC…(see how I did that?) Volunteers flew in from all over the country and we swarmed the Hill in our sexy blue jackets. There aren’t words for how excited I was to discover these had thumb holes. I love thumb holes.
Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.
We secured promises of support from the offices of John Lewis, Hank Johnson and David Scott. The meeting with David Scott was my favorite as I had no expectation that we’d be promised support on the spot like that, and the staff member we met with immediately began asking questions about what was going on back in Georgia with HB885 when we mentioned TSC’s link to seizures. It was awesome to know they were talking up there. Don’t worry, fearless trainers from the previous evening’s dinner, Reiko got us right back on topic 🙂
Chris and I even got some time the first day to explore so we went to Ford’s Theatre and the house where Lincoln died. His blood-stained pillow and the tiny gun that killed him are on display. The balcony is preserved as it was, and I was actually surprised to learn that it is a working theater. We did some more walking around including a photo op at the White House where our phones died simultaneously only letting us each get one shot. I don’t want one more stupid iPhone model coming out until they can make a battery that lasts more than five minutes.
The last night we were there was the Volunteer Recognition Dinner. Four people were awarded a Franny, the volunteer of the year award for 2013. Chris had broken down and told me he nominated me a couple weeks prior — so very sweet — but that did nothing for my slow processing as one of the winners was described as having a son Connor’s age, a blog with the same amount of hits and followers as mine and involved in similar activities. I thought, man, who is this person leading such a similar life? Oh it was ME! ME!
Then, like a jerk, I forgot to thank Chris a la Hilary Swank and Sean Penn who ended up divorced after their Oscar acceptance speech snubs of their significant others. He swears it doesn’t matter, but just in case: THANK YOU, MY AWESOME HUSBAND!
Well, if you haven’t read it yet, check out my post from Sunday here. It is now my most read and shared post of all time. I’m thrilled to help get the message out on the potential benefits of medical cannabis. Though I can’t help but wonder why you all aren’t as intrigued when I blog about my repetitive dreams of my teeth falling out or weight loss powder shakes…
With Chris Hawkey.With CEO and President of the TS Alliance Kari Rosbeck.Grandma and Grandpa took Connor to aquatic therapy while we were gone. We did it! Four whole nights away! Guess we’re ready for the islands…
Quick plug: Lisa Cummings, another TSC mom I know through our online community often writes and shares poems about her life with her daughter, TSC and special needs. She just published her first collection of poetry and it is available through Amazon. Please check it out here.
The journey toward the ketogenic diet continues…and might end with me jamming a screwdriver in my ear. We have been pursuing diet therapy since before Thanksgiving. The wait lists at keto clinics are ridiculous. The one that could get us in the earliest was in Alabama, so we had our new patient appointment Tuesday. Two hours there and back again. Connor’s neurologist had sent his 157-page chart over well in advance. I knew that this appointment would be, for the most part, a formality as the neuro that will oversee him on keto has never treated him. As expected, it was a lot of repeating his history. There was only one thing I wanted after 2.5 months waiting–the date Connor will be admitted so we can get this damn diet started. We’ve had this hanging over us for months, afraid to plan trips and make plans. I thought that would finally come to an end yesterday, but it didn’t. She agreed to take him on, but we still have to wait to hear when he gets admitted. She hoped it would be February, but couldn’t say for sure. So until they call, I have to worry that they will want him during the March dates we’re in DC or Boston OR that they will want him in right before those dates and I will have two days to prepare for traveling on this insanely strict diet.
To be honest, the appointment was a little strange. First, I was bummed to find out that our stay will be longer than the typical keto stay because she wants to do an EEG first. Granted it has been a while since he had one, but I don’t want to spend a week in the stupid hospital. But if that’s what it takes to get things going, I wasn’t going to argue. The thing is, we just got the feel that she wasn’t that thrilled with the ketogenic diet. She wanted to know why we weren’t pursuing surgery. I consider surgery a last resort for the most part. It was an easy choice the first time because the seizures were so frequent and causing major developmental delays. But he’s much better now, and has already responded to some tweaks I’ve made in his diet on my own leading me to believe the diet will be beneficial. Also his EEGs, while indicating activity from the left occipital lobe, have also shown activity from other areas.
Don’t get me wrong…it’s not that we wouldn’t consider surgery again if a newer EEG could determine one particular tuber as the only or primary culprit (and my guess is that it would be the one in the left occipital) but since our referral was specifically for the diet, I really wasn’t expecting such enthusiasm for surgery. The doctor even made a point of expressing concern about potential side effects of the diet, and I was thinking…what is going on here? At any rate, surgery is not on the table for us right now. I see no need for that if keto can do the trick.
I know neurologists have very differing opinions on the best course of action…I just finished reading a book (I recommend Fighting Back With Fat by Whitmer and Riether) that talked about how the diet was often used decades ago, but fell out of favor with the emergence of so many pharmaceutical options coming on the market. It made a comeback in the 90s when the son of a filmmaker — Jim Abrahams — was diagnosed with epilepsy and he wasn’t responding to medications. The ketogenic diet was his savior. His father later made a film called First Do No Harm with Meryl Streep and started the Charlie Foundation. Since then keto clinics have popped up all over the country, and in many countries around the world. More and more neurologists are coming on board with diet therapy because it has proven results, but there are still some that shy away, especially in other countries. The book had me so gung ho on the diet, that this neuro’s lackluster response threw me for a loop. The nurse that came in prior was very enthusiastic about it. But forward we shall move.
Wednesday was a better day. I finally met many of the other parents fighting for HB 885/ Haleigh’s Hope so that we can have access to medical cannabis in Georgia when we met for a press conference at the capitol building. I’ve been to DC to meet with legislators, but this was actually my first trip to the gold dome, even though I’ve lived in the Atlanta area since 1992. I was not prepared for how packed it would be. As a former teacher, I feel I can express what so many of you are thinking in many public places (i.e. Fernbank, the aquarium, the zoo, etc). Field trips are evil. A necessary evil. But evil nonetheless. I remember being at the aquarium in the role of teacher, with multiple schools crowding the walkways, and looking at all the people who paid full-price admission and thinking, “You poor b*******.” As I crammed onto crowded capitol elevators, I thought, the kids need to see these places, but perhaps we should pass a bill banning scavenger hunts. But I digress.
Dressed for politicking at the capitol.
It was freezing outside, very much in contrast with the 100 degrees inside the building. The room numbers are all out of order, too, thus ensuring a healthy workout. I started out meeting my representative Don Parsons, who has signed the bill. We had a nice conversation and he asked me many questions about Connor. Then I had a scheduled meeting with my senator Judson Hill. That didn’t happen as he had not come in that morning. I was disappointed to say the least. I am not sure where he stands on the bill as I have had no luck getting a response from him. I continue to follow up.
Check out that landmark in background! Pshh. Not the gold-domed capitol…Johnny Rockets!
We had a press conference at 11:15 with WSB’s Lori Geary, who has been a champion of the cause, presenting it in an appropriate way and making every effort to make key issues clear. For example, we are still trying to make sure people understand that kids aren’t smoking joints. It is an oil form, high in CBD, low in THC — though I do want to be clear that THC has medicinal benefits as well. But since it is the psychoactive component, people are more afraid of it than the CBD. At any rate, the kids aren’t getting stoned.
WSB’s Lori Geary speaking with affected families.
Several parents spoke about their kids: Shannon Cloud, whose daughter has Dravet syndrome; Janea Cox whose daughter has LGS and for whom the bill is named (Haleigh’s Hope); Chris Clark, whose wife and child have relocated for treatment; Jonathan Jiles, whose son was born with Ohtahara syndrome; and Aaron Klepinger, who flew in from Colorado to speak about his son’s successful treatment in Colorado and how they want to return to their Georgia home. FYI: Haleigh is in PICU and really struggling. They are looking at having to relocate a medically fragile child to Colorado when she becomes stable enough for a life flight. Fundraising efforts have started here.
Aaron Klepinger clutching a photo of his son Hunter.Shannon Cloud addressing the need for medical cannabis.
I’ll keep you updated as it progresses through the process. Here is the news clip (you can see me and Connor in the background several times).
I’ll close with a few more photos from the capitol:
Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).It’s hard to tell a delighted toddler that you aren’t supposed to pet service dogs 🙂
I am but a mere soul in the mud trying to help push the truck, but credit for the amazing momentum of the last few weeks goes to a group of parents at the steering wheel. I have had the pleasure of getting to know some of them if only online. For every e-mail I send or person I try to persuade, they have done 100x that with face-to-face meetings, contacts to the media and bringing legislators that were once wary over the line to full support.
Please also check out Kason Jiles’ story. Connor was once in that position, stuck in the NICU with dozens of seizures every day.
All of this has made realize how lucky we are. Connor’s seizures are not good and are certainly a factor in his physical and speech delays — and there is always the fear of SUDEP or status seizures, but some of these parents are literally trying to save their kids’ lives. Not long-term — I mean NOW. As in they face very immediate life and death issues–each day they wait is a life time. Where we have managed to get Connor down to roughly three clinical seizures a day, their kids are seizing constantly. They have exhausted traditional options. FDA-approved meds have FAILED, the ketogenic diet has FAILED, the VNS implant has FAILED, brain surgery has FAILED or is not an option. Next month we start Connor on the ketogenic diet. In many ways I feel like that is our last option. Sure there are more meds we could try, but we’ve already tried seven.
I am very optimistic about the diet. I’ve done some tweaking to his diet in preparation for the real thing and I really think it has helped. His seizures are mostly 30 seconds and under and now only seem to happen upon waking in the morning and at nap time. But keto may not stop them 100 percent or it may not work forever — not to mention the incredible difficulty and lack of nutrition on the diet. Connor deserves every possible option on the table. All of these kids do.
Many people remain locked in an image of bongs and rolling joints. This is not how children would take this medication. It is an oil that they would take under their tongue and with food. They don’t stumble around high. There are other forms as well, but that is the one I am most familiar with. No child is going to be smoking.
President Jerry Luquire of the Georgia Christian Coalition has spoken against us with the media and to his followers. A number of parents began to e-mail and comment on their Facebook page pleading to be heard. All of our (polite) comments were deleted from the page and several people were blocked from commenting further. This was one of his responses to a parent. I have in no way altered it other than to remove the mom and child’s name:
Ms [name removed to protect her privacy], thank you for writing me on behalf of [child].
As a husnad, father and grandfather of children who are free of medical problems, I feel guilty somehow that I have been so blessed when you and others face such unspeakable pain. I am truly sorry. Our prayers join yours and others that those who can change the course of medical treatment will do so.
[Mom] if the law were changed in Georgia tomorrow, there would be no relief to situations where cannabis is required. The change that will help your son must be made at the federal level. There is no action we can take to bring about that change by enacting a permissive law in Georgia.
I was offered this observation Monday by a parent who said his son was doing fine with a marijuana treatment, using his term, and he felt he no more broke the law by buying it illegally than if Georgia make it ok, but the feds did not and he bought it then.
You make a compelling case for federal law change…please do not give up.
In Christian compassion
Jerry Luquire 706 366 8298 You are free to share this
response as you see fit.Co, thank you for writing me on behalf of [child].
Interesting. So his argument is the conflict of state laws and federal laws. This to him is more important than saving lives. Not to mention, we have already seen that the feds are making the choice not to interfere in other states. So does this mean he would support us if the feds wanted to make a change? I can’t help but suspect he would not. But this is a great way to oppose a potentially life-saving/changing medication and try not to look like a bad guy. Luquire made quite a name for himself battling Sunday alcohol sales and trying to prevent it from going to a vote by citizens, even though this was a local county and city issue. So I find this quote from a 2011 news article very interesting:
To my readers that haven’t yet done so, please contact your legislators and Governor Deal letting them know that you want sick people to have access to medical cannabis. This is being done at the state level, so we’re not asking you to contact your representatives in D.C., but the ones right here making Georgia law.
If you aren’t sure who your local legislators are, find out here.
At the end of my previous post, I included an open letter written by one of the parents leading this cause. He includes hard data on how his son has been helped since they were left with no choice but to leave their family and go to Colorado. If you missed it, please check it out.
And for those still hung up on not being able to see marijuana as anything but an illegal drug (even though pediatric treatment is an oil that isn’t smoked and doesn’t get you high), why are you okay with FDA-approved drugs that can do this:
One of Connor’s meds carries this rare but potential side effect. Read about it here.
Still opposed? I guess you are okay with seeing my baby do this.
This is Hunter and he is eight years old. I met his mom, first at a music class she attended with her younger child, then I saw her again at the pool where Hunter and Connor both receive aquatic therapy. One day I realized I hadn’t seen them in quite some time, only to meet mom and dad again in a Facebook group. They had moved to Colorado to obtain treatment for Hunter after several seizure medications, VNS and the ketogenic diet failed him.
They have finally found an effective treatment in the form of medical marijuana–20 minute seizures are down to two minutes and he went six days straight seizure free for the first time in eight years –but now they can’t come home to Georgia. And they aren’t the only ones. Many families have left everything behind to move to Colorado to obtain access to medical marijuana. Charlotte’s Web is a well-known strain featured in the CNN special with Dr. Sanjay Gupta and created by Realm of Caring. It is low in THC so the kids do NOT get high, and it is in the form of an oil, so they do NOT smoke it. Sometimes people even have to leave other legal states so that they can get the form of marijuana their child needs. New Jersey is such an example. Though medical marijuana is legal, Gov. Chris Christie has made it exceptionally difficult for families to get what they need.
From the Huffington Post: “See this is what happens. Every time you sign one expansion, then the advocates will come back and ask for another one,” the governor proclaimed during a press conference from his statehouse office. “Here’s what the advocates want: they want legalization of marijuana in New Jersey. It will not happen on my watch, ever. I am done expanding the medical marijuana program under any circumstances. So we’re done.”
Remember that as he sets his sights on the Oval Office.
Georgia Governor Nathan Deal also opposes it.
These families want to come home. And I don’t want to one day face the same decision they have if we can’t get Connor’s seizures under control. If you are interested in the legalization of medical marijuana in Georgia, please check out this group.
One night in college we all dressed up, left the dorms and headed downtown. One of my friend’s cousins was visiting from Miami. He’s gay. I don’t remember where all we were headed, but Boneshakers, a gay club back in the day in Athens, was one of our destinations. We had fun, and I thought, aren’t I so progressive, going to a gay club?
The next day, another friend pointed out to me that I had referred to several things that annoyed me that evening as “gay.” My friend and her cousin had exchanged looks, but never said anything to me. I was oblivious–never even realized what I was saying or how it would be perceived. I wasn’t saying it to be hateful, it was slang. But I immediately eradicated it from my vocabulary when I realized how it came across.
Same thing about the “r” word. I confess I used to use that word, too. It wasn’t until I personally knew people that were intensely pained by it that I finally got it and dropped it. Sometimes, we say things not understanding the impact. When my TSC friends discuss their hatred of the term and people who use it, I feel like there is a scarlet R burning on my chest, and I wonder, do they know? Do they know I was one of them?
I’m bothered by this whole Duck Dynasty thing, but not because of what was said and who said it. Frankly, take into account the guy’s age, background and where he lives. It’s not particularly shocking. And if you met him in person, I think he’d be a really nice guy. I don’t watch the show, but I’ve seen bits and pieces, as well as stories of things they have done to help others in need. I personally don’t like what he said, and just as he has the right to say it, people have the right to be angry, and A&E has the right to “protect their brand.” That being said, I’m not all that sympathetic to A&E either because I’m sure they have to sign off on everything the cast does, and come on, they knew his beliefs. No, I don’t care about any of that. What I care about is what I see on social media.
A lot of fans are angry about Phil Robertson’s suspension from the show. They feel he is being attacked for being a Christian and living by the Bible. And so the posts and memes began. Phil Robertson for president! I stand with Phil! But then some started getting more…honest. It turned into a revering of someone who stood up for the truth about homosexuality.
Some nasty things have been posted as status updates, nasty comments have been made beneath them, nasty things have been “liked” that then show up in your friends’ news feeds. I even read some cruel comments made by family members of one of my FB friends who is part of the LGBT community. Family. Wow. This led me to look closer at the friends lists of some of the people whose disturbing posts I saw.
Are they aware that they are connected to members of the LGBT community? These days it’s hard not to be because Facebook isn’t just about who you know now. You reconnect with high school and college friends, co-workers, sometimes even elementary friends. We’re connected to other families who share our path with special needs or have common goals or beliefs. Maybe you actually think you don’t know any gay people? Are you sure? Check your friends list again. Maybe, just maybe, you have a gay friend who is working towards a goal you both hold dear. Did you want them to see that? Was it intentional or an accident? And now that you know, would you post it again?
I have no doubt I’ve said and posted things that others don’t like. Sometimes I have no idea I’m irritating someone until I break the last straw and they unload on me because I’ve been rubbing them the wrong way for three months. Sometimes it takes me a while to get it, too.
There is a meme that floats around every so often that I always snicker at. It cracks a joke about a well known practice of a particular religion. I’ve wanted to post it more than once. But I never have because I know I am connected to people in that religion. I have no idea if they’d even care, but since this is one of those rare occasions in which I have some self awareness, I don’t.
I’m not trying to change anyone’s minds about their beliefs. I’m just saying, look through your friend list. Put an actual face on what you’re saying. I know I didn’t get it until I had faces for who I hurt with the words gay and retarded.
I’m not perfect. I might offend you tomorrow. Maybe I’m offending you right now. I have jerk thoughts all the time, and sometimes I say them, too. But think about how you feel when someone posts an update calling something or someone retarded. Or how you feel if someone posts that all Christians are hateful. Or all liberals are stupid. Or all conservatives are evil. Or when family and friends reject you because of the circumstances of your life. I wonder what it’s like to hop on FB to see what your friends are up to, only to see that a bunch of them believe you’re destined for hell.
I don’t write this because I think you will change your beliefs. I write it because I wonder if you’ll change the way you post.
“I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need in fighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.” -Roger Gail Lyon to Congress in 1984, shortly before his death from AIDS.
“It’s a simple issue. Please don’t let my daughter die, Governor.” Father of Vivian who has Dravet syndrome, Brian Wilson, to Gov. Chris Christie
I recently became a member of a Facebook group about the use of pediatric cannabis, consisting of parents who are using medical marijuana to treat their children’s serious illnesses, as well as parents who are seeking to do so. As we live in Georgia, I fear we will be at the end of the list of states to make it available, but I’m wanting to keep an eye on things as you probably saw in my previous post. I simply don’t understand why people are so afraid of MMJ, but it’s okay that my son takes Onfi which carries this potential side effect.
Two members of the group have a daughter with Dravet Syndrome, a severe form of epilepsy. If you watched Dr. Sanjay Gupta’s special Weed, which featured Charlotte, the little girl in Colorado who had her life transformed by MMJ, you have seen what Dravet can do to a person. This family lives in New Jersey, a legal state, but one with some of the largest restrictions since Gov. Chris Christie shakes in fear that he is treading a slippery slope in which — gasp! — adults might get high just for fun. This family had just completed jumping through the hoops, completing paperwork and sending the $200 fee to the state last week. Her marijuana application is pending.
On November 27th Sabina Rose suffered a 25-hour seizure that caused brain damage and swelling. She died December 2.
But, hey, at least those darn adults can’t get high.
Mixed Up Mommy 