I've been listening to my mom's old record albums a lot lately. When we moved in together she brought her crate of records that had been stashed away - probably since before I was born. When I wanted to listen to Creedence's album "Willy and the Poor Boys", I had to slice the piece of tape she had put on the edge to keep the record from falling out. The song "Effigy" just struck me and gave me goosebumps: particularly the lyrics "Silent Majority Weren't Keeping Quiet Anymore".
Before Abram, I always knew the medical field was filled with holes but I had no idea how many. I had no idea how hard we'd have to fight to get someone to listen to me when we wouldn't stop screaming as a newborn. I had no idea that 3 years later we'd still be fighting for diagnoses and for good decent doctors.
We finally have a wonderful Pediatrician who we love and adore and the best Pharmacist a person could ask for. He's known me for 15 years and has always helped me with choices on what is best for me and mine.
I must admit that I was pretty hurt by the fact that our Neurologist who had been seeing my son since he was 10 months old was unwilling to help us. I am certain that much of his inability to help comes from the fact that his job relies on his compliance with Hospital Policy but it came with great disappointment. It's hard to fathom how someone can tell a parent that there is a medicine that can help your child, encourage you to get it and then yet refuse to sign a Registration Card to prevent you from being prosecuted. It's just disappointing because I thought they really cared. I was wrong. What's even worse is that everyone is more worried about getting sued instead of worrying about what is right. Yet, I have to remember that our Neurologist has to worry about their job and their own family as well. I should not expect him to risk his livelihood for my child. I should however, expect that a Hospital would do what is best.
The last three years have been spent fighting for doctors, for answers, for specialists and then sub-specialists. I feel like I'm always advocating, researching and reading and then re-reading. I had no idea how hard it would be to find a team that would cover all of our bases and make sure that everything is going well. I think we are finally on the right track but only time will tell. Kids with complex medical histories are hard to service and I fear that the changes our Governor has made to his Medicaid will only make things worse in 2016 but I'll just fight for that too.
For now, my focus is on getting the Iowa Law changed so my son can get help. The current CBD Bill in our state isn't enough. There are NO Neurologists in the State of Iowa who are willing to stand up and help a little boy get better on a natural medicine like hemp oil. We NEED a more comprehensive Medical Marijuana Bill put into place so children and adults alike don't have to suffer from seizures, neurological disorders and auto-immune diseases and more.
I will always fight for Abe. It's just unfortunate that it has to be so hard to get the right care for kids who confuse the system. It's hard to get the right care when you know more than a lot of the people you are going to for help in these Hospitals. It's hard to know who really wants to help you and who just wants your money. It's hard to know if I am ever making the right decisions. So I just have to go with my mama gut and fight for what I feel to be right.
I just know that I want what is best for my son. And adding more Pharmas to an already globally delayed child is not the answer. He deserves a quality of life where he can be a kid!! He deserves a try at the very least. He has been on some form of pharmaceutical medication from Day One and it's time to stop.
He deserves to be a kid.
And I hope that someday he'll read these Blog Entries and be happy. But for now, I'd settle for hearing him call me Mama again. The seizures stole that from me too.
The silent majority aren't keepin' quiet anymore.
Things are hard when it comes to what's right and what is wrong. I have tried my best to do what is right when it comes to the extent of the law. I have followed every avenue that was presented. I have asked nicely on more than one occasion for the help that my son needs and for a medicine that can help him. I have been advised to get help from law enforcement and I have been advised against it. I have been told to "do it anyway" from my own lawmakers. I have also been told "I don't know" when asked about the specifics of a law that they themselves have made.
I am beyond frustrated. And in fighting a fight for a medicine that has a stigma so far removed from what is going on in our generation - it is most unfair. If someone had told me when I had my son that I would be fighting for legal access to CBD I would have asked them "CB What?". The truth is - I had no idea I would have to fight so hard just to give my son good care.
If you've been reading this blog - you know our struggles. You know how hard I've had to fight for answers for my son. We have been through the ringer with the medical field way before we were even told our son has Epilepsy.
We have been told contradicting information and advice since Day 1. I still often linger on the "what-ifs" of the day he was born and if this could have been prevented for the most part. Obviously, I can't prevent a Chromosome Disorder or a fused kidney or a mass in his brain but I often wonder if his Hypotonia, Global Delays and Speech Issues have more to do with his lack of 02 at Birth than anything else. But.. I can do nothing about that. It is what it is.
What I can do is fight. I can educate. I can share our story. I can try to hold back tears when I am showing a Senator a video of my son having a fit on Keppra because he can barely handle seeing my son like that. I can try to hold back an Ugly Cry as I share with the President of the Iowa's Senate's Assistant that we STILL can't get help. I can hold back my rage when yet another Physician is more worried about getting sued and "not having a legal leg to stand on".
My son deserves a quality of life that doesn't include eyeball lesions, painful rashes, more severe seizures and slower thinking. If a person looks (actually LOOKS) at the things the FDA Approves (and often rescinds) - they make think twice about giving medicines to a child that have the possibility of life-long damaging side effects over a plant. A PLANT.
It's not right and it's not fair. But I'm fighting as always. Always for Abe.
(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.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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