Links and Updates about Senate Hearing 1/21/15

Gavin and I took Owen up to Topeka a few weeks ago to testify on behalf of legalizing medical cannabis for Owen to access. My dad, sister, brother, and friends Vicky and Haley Batchman all made the trip up to the Capitol to show their support for Owen. Below are a few media links from the hearing:

http://www.gbtribune.com/m/section/1/article/81244/

http://ksn.com/2015/01/22/family-hopes-medical-marijuana-can-help-their-son-control-his-seizures/

Here are some pictures of our debut at the Capitol:


                


                            

An update on how things are progressing.......
I received a flood of positive support and encouraging reactions from all avenues, including committee members, friends and family, media outlets, and complete strangers from every generation and walk of life. The one person who sat emotionless and less than moved was the one person I needed to crack....the chairperson of the Public Health and Welfare Committee, Senator Mary Pilcher-Cook (R-Shawnee). While everyone in the room seemed drawn to tears from hearing my testimony about Owen's hardships, she did nothing. It was pretty devastating to come to the realization that not everyone wants and will do what's best for our son. However, I am not defeated and have a few options to pursue, including:

1. Continue to open the lines of communication with the Senate Health and Welfare Committee. I just found out last night that if we can persuade at least 5 committee members to vote that SB9 deserves a democratic process, instead of being hushed by one opinion who's not seemingly representing the voice of the people of Kansas, then SB9 could in fact progress to a formal hearing. I know these committee members are compassionate and believe in the way our governmental system works; I am confident they will side with Owen and these other sick children.

2. I am also working to get medical cannabis amended onto another bill, a House bill this time. It is called "The Right to Try" bill, in which terminally ill Kansans would be able to use non-FDA approved or experimental medication for a debilitating or fatal illness.

3. A Hemp Bill is being introduced as we speak. Although this bill would possibly be too specific for Owen, it would be a start in the right direction....and we will take anything we can get at this point!

4. The House also has a similar medical cannabis bill, HB2011, that somewhere down the road could be a possibility if these other three scenarios don't pan out. I am beginning to reach out to House Health Committee members, hoping that these individuals will invest in Owen's well-being.

Well, there you have it, this is how I've been spending all my time these days! Speaking of spending my time, I have been in contact with our bishop from the Dodge City diocese, Bishop John (who by the way, seems to love Owen!). I wanted his opinion on the ethics involving medical cannabis and whether or not the Catholic church approves. He overall--based on a couple of emails--seems supportive. He is also coming over to our house for lunch this Sunday to discuss it further. Please wish us luck, and cross your fingers that Dex (or Gavin) doesn't say anything inappropriate!!!! :/

As always, we are so thankful for everyone's unconditional support for our family, especially for Owen. That kid is a rock star, and Gavin and I are just glad you all love him like we do.

KWCH Story About Owen

So we were on the news. This sweet young reporter named Anna visited our house, watched us play, and asked me a bunch of questions about Owen. The minute she walked through the door this is what she heard, "Hey, guess how old I am? I'm four! Hey, watch how fast I can run in these shoes! Hey, take a picture of my back!".....I think Dex fell in love.:) We were extremely happy with the story (except for the story two minutes before it on the rise in synthetic marijuana use in Salina. REALLY??!!) Of course, naturally I think about all the important information I discussed that didn't make the cut, but overall we are excited with the stir this story is causing! Here's the link in case you missed it!

http://www.kwch.com/news/local-news/family-pushes-to-legalize-marijuana-to-help-sons-seizures/29584126

Medical Cannabis for Owen 101

It's time to get educated Warriors! What do you say when someone asks you about medical marijuana, Owen, or our cause in general?

Medical Cannabis for Owen 101:

1. This is Owen's best and last hope at a healthy life. Dravet Syndrome is a developmental roller coaster of losing and gaining skills; if seizures are controlled, children oftentimes progress and thrive. OWEN DESERVES A CHANCE TO THRIVE!!
2. Medical cannabis is NOT recreational marijuana. Those who use marijuana will use it whether it's legal or not; don't let those who abuse it ruin the chances of someone who could medically benefit.
3. Legalize and tax medical marijuana so our economy can benefit...(again...those who use will use whether it's legal or not.) Law enforcement could also benefit by focusing their time, money, jail space, and energy on more serious crimes.
4. Children like Owen will not be experiencing a "high" and will not smoke the cannabis; he will take an oil-based form of the medication with food. Owen will be on a high CBD/low THC strain. In other words, it is JUST MEDICINE....without the risky side effects like that of pharmaceuticals.
5. Many others--not just children with epilepsy--can benefit from medical cannabis, namely those suffering from cancer, chronic pain, Alzheimer's, PTSD, and many more serious conditions...do you realize how many Kansans abuse, become addicted to, or drive under the influence of prescription medications that are totally "legal"?
6. One doesn't have to be a "pothead" to benefit from medical marijuana; we are a moral, educated, conservative family who has done the research. Medical cannabis could quite possibly change Owen's life.

Owen's New Fairy Godmother

Before I begin, I feel obligated to insert the disclaimer that this is a "everything happens for a reason" type story. Can I just quickly vent about that phrase for a minute please??? I HATE IT. And it's not that I don't believe it, I just hate it...mainly because I have heard it a GAZILLION times throughout the last 8 years. What mom wants to EVER believe that your daughter was taken from you at birth "for a reason," or your son may never walk, talk, or stop seizing his entire life "for a reason," or that your son will never remember life before Type I diabetes "for a reason"???? It's just a difficult phrase to digest. End of rant.

So a week or two ago, Gavin called me from a side job he is working on outside of Ellinwood. He told me the daughter approached him inquiring about his wife and what I knew about medical cannabis. He gave her my number and that was that. She called, this spunky, blonde 23-year-old fireball, Haley. Within an hour or two of calling me she was at my front door and we began discussing Owen and his journey. This was the start of an unexpected, dominating duo. Since we first met a little over a week ago, Haley has tackled the following: created Owen's FB page; connected me with an extremely helpful legislator who advises me on everything from SB9 wording to what counts as appropriate attire for political events; put together flyers, stickers, brochures, and T-shirts for Owen's cause; attended an event with Lt. Gov. Colyer with me; and contacted many AWESOME, helpful, empathetic, giving individuals including but not limited to her parents Chris and Vicky and Todd their business partner. These people have taken me in and genuinely want the best for Owen. This is one of the many gifts that Owen gives to us,....we get to see the BEST in everyone. This kid is such an awesome blessing.

The creepiest part of all this? Haley wouldn't have found me if Gavin wasn't working on her parents' house. Gavin wouldn't have taken the side job if we weren't strapped for cash and back to a one-income family. We wouldn't be a one-income family right now if Blake didn't get diabetes. And I wouldn't be a stay-at-home mom who endlessly gets to fight for the medicine my son desperately needs to try. Crazy how things happen for a reason.....:)

Without further ado, meet Haley, the boys' new honorary aunt aka Owen's campaign manager!!!

THANK YOU FOR ALL YOUR HELP HALEY, YOU'RE AWESOME!!!

Go Chiefs!...and Wildcats!

Football season is here! Which is pretty much the only reason I get excited for this time of year....new school year (no thanks), hunting season (blah), snow (please stay away), spending an hour putting socks, coats, shoes on little kids (annoying). GO CHIEFS!!!!!

Lucky Number Seven

Owen turned 7 last week. Hopefully this year will hold up to its lucky reputation and give this little boy something to cheer about! Owen had a great birthday full of people he loves the most in the world. Even though Owen has had a pretty rough go with Dravet Syndrome, he won the family and friends lottery....he's very lucky to have so many awesome people in his corner!

Big-time 1st Grader

 

Time please stop. Owen started first grade and he's pushing 50 lbs. The reality is setting in....we won't be able to just pick him up and carry him wherever we go forever. He's becoming such a handsome, sweet young man and isn't so much a cute little boy anymore. Insert sad face.