(Fighting to get a CBD Registration Card has been proven to be quite difficult. So, I have not stopped contacting my State's Representatives. I have officially written each of my State's Senators TWICE and out of 24 Senators - only 3 have responded. Yes, I get that they are out-of-session but they still check their e-mails according to the out-of-office auto responses I have been getting. I have also written to each and every member of the Republican House Members (including my own Rep Ralph Watts) and even had the opportunity to speak to the now newly voted in House Speaker Upmeyer as well.
Tuesday, my District's Senator, Jake Chapman will be coming to our home to meet Abram. I'm excited for him to meet him and see how hard he has to work to do things that his little ones have accomplished with ease. I must admit - before Abram - I had no idea what Epilepsy meant. In my head - I pictured grand mals and only in context with what I'd seen on television. I remember seeing a great old Graphic Design campaign against Epilepsy that used the old stigmas of Epilepsy with silhouttes of children from when I was in college but that was it. I had no idea what it meant for someone to HAVE EPILEPSY. I still don't. I'm still learning. That face down there? That's my view of what Epilepsy is what what is can do to a person. It can make me fear every single night that he might not be here in the morning. It makes me turn on the monitor a million times at night to make sure that he is still breathing. It makes me get second, third and sometimes fourth opinions because so many times we've been disappointed and let down by the people we are supposed to be able to put our trust into. I fight for CBD because I love seeing this smile. I fight for CBD because I long to hear his little voice tell me what his favorite things are or what he's thinking or if he's hurting. Epilepsy is a different battle for each of us. I've met so many other moms with kids whose issues are much more severe but those moms still reach out to share a kind word. Epilepsy steals your child from you little bits at a time. The Pharmaceuticals they want us to give our children can have toxic and long-lasting and often times permanent side effects and even death. Epilepsy steals their words. Epilepsy will rob you of your faith in doctors, in politicians and honestly - even your faith in yourself. It's hard not to be able to take away your child's suffering. It's even harder when there is a medication with a lot less side effects that even has a slight possibility of making things better but yet not enough people in Politics wants to get involved and stand up for these kids that have no voice. I will continue to fight. I am hoping that the Iowa Politicians help make things right in our home state while the Federal Government hopefully steps in and does the right thing to support H.R 1635 and S.1333. This is the face of Epilepsy in my life. He is worth fighting for. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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