Disclosure :: Red Stick Moms Blog seeks to honor the voices of all moms living in Louisiana. We understand and respect that this is controversial topic, but we ask that you read Katie’s journey to seek understanding and – should you desire to weigh in – that you engage respectfully.
I’m an unlikely medical marijuana supporter.
I’m a wife to a law enforcement officer. I’m a mom to three beautiful boys. I’m a teacher. I’m a devout Catholic. I’m all the things you wouldn’t expect of person advocating for the legalization of medical marijuana here in this very conservative state of Louisiana.
I am advocating for medical marijuana for my nine year old son.
My son Connor is a joyful child with the biggest brown eyes you’ve ever seen. He has the funniest toothless grin and loves to show it off. His infectious laugh will put an instant smile on your face. Connor is an amazing little boy, but is plagued with uncontrollable seizures.
At 6 weeks old, my delicate, precious newborn was given numerous diagnoses due to a rare brain malformation. Doctors informed my husband and I that our sweet baby would be developmentally delayed and would most certainly experience seizures. We had no clue what our life would entail that chilly January day when we finally took him home.
The seizures began at 6 months old. By two years old, Connor was experiencing up to 100 seizures a day and required a helmet because my miracle boy had learned how to sit up unassisted. As my child learned new skills and hit major milestones, my heart would swell with pride, but then a seizure would come and knock him down … literally. One step forward, two steps back. That was his life due to uncontrollable seizures.
The seizures progressively got worse. The medications grew in number and strength and the side effects from them made their presence known quickly. My angel boy was sleeping most of the day due to the sedating side effects. His teeth were decalcified. His gums were swelling causing him pain when he ate. He ended up losing his appetite all together due to another medication and a feeding tube was placed in his tiny little belly.
Over the past nine years, Connor has tried more medications than I can count – even one with a side effect of vision loss (YES, it could cause blindness). He’s tried diets. He’s had surgeries. He’s done IVIG and steroid infusions. He’s done it all. He’s officially run out of options here in Louisiana. Without seizure control and without putting an end to the horrific FDA approved medications, my child’s life is in danger.
I live in fear of the next big seizure that could take him from my arms. I live in fear that my child’s liver will shut down because of the medication that I force down his feeding tube twice a day. I live in fear that I am not trying hard enough to give him the best quality of life possible.
So here I am … a desperate mom fighting for access to medical marijuana oil.
Connor and I can be found walking the halls of Louisiana’s state capital on any given day lobbying for the passage of Senate Bill 271. I plead our case to legislators, explaining how it could be a game changer and a life saver for my son and thousands others. I am actively fighting to break the stigma that medical marijuana is for druggies looking for their next high. Instead my son who is already as high as a kite on barbiturates needs this marijuana oil to actually come back down to Earth.
I have been interviewed by news and radio stations trying earnestly to educate the public on what exactly this bill does and who it will help. I have become the face of a medical marijuana movement for my son and with this comes backlash from the public.
“What an idiot!” “I bet you are a liberal pothead looking for more weed.” “Why would you want to drug your child?” “How about you try medicating him instead of giving him pot?”
These are just a few of the angry outbursts that have flooded my inbox in the past few weeks. We all feel the need to voice our opinions these days and hiding behind a bright, glassy screen makes us feel brave to say words that we would never say in person.
The individuals who felt the desire to give me their input do not walk in my shoes. These people do not hold their child every night consoling them as yet another seizure takes hostage of their brain. They don’t watch their child waste away before their eyes. They live a different life from me and they don’t understand.
When your child is sick you take care of them. Then when your child doesn’t recover from that illness you keep looking for answers to get them well, right? That is precisely what I’m doing. It’s our job as parents to take care of our children. We protect the life that we brought into this world with every ounce of our being.
I refuse to sit back and be okay with the constant electrical storm in Connor’s brain. I refuse to be forced to move to another state to get him the help and treatment that could potentially change his life. I refuse to be silenced in a state where marijuana is a four letter word. I refuse to give up on my child.
While you may not fit into my shoes, I hope that you would try if only for a moment to imagine slipping them on before judging me. Imagine if my dirty blonde haired boy riding in his bright blue wheelchair was yours, what would you do in order to save his life?
Katie is a 31 year old self proclaimed Louisiana Southern Belle! She and her “daddy trooper” husband Coye live just outside of Baton Rouge in Tangipahoa Parish. Katie has three sons-Aaron, Connor, and Cooper, and enjoys living a life with boys! Katie attended Southeastern Louisiana University where she obtained a bachelor’s degree in Elementary and Special Education. Little did Katie know how her love of children with special needs would grow shortly after she graduated college. Connor was born with a rare brain disorder called Schizencephaly – he is wheelchair bound, nonverbal, blind, battles retractable epilepsy, and is fed through a feeding tube. Katie and Connor endure the many trials they are put through with a smile and joy in their heart. She loves seeking out families who are in need to offer hope, love, and remind them of God’s faithfulness. Katie is an active member in her church, St. Helena Catholic Church and teaches Special Education Inclusion at her hometown public school. She enjoys being crafty, making wreaths, cooking, and grocery shopping with her pearls on! While her husband shakes his head, she has a need to stay busy all the time! Katie’s newest venture is writing a children’s book series affectionately titled, “The Adventures of Connor Man.”
Couldn’t agree with you more. My Dr. told me one thing that could help my ulcerative colitis is marijuana, but it is illegal. Without that one last thing to try I am facing going on low dose chemotherapy drugs for the rest of my life. These increase my risk of lymphoma, melanoma, ovarian cancer, and who knows what else. But no, big government is looking out for me and won’t let me try marijuana. Infuriating!
I absolutely loved this article and cried the whole time while reading it. I shared it on my page, Brittany Allison Corgan Memorial 5K. My sister Brittany passed away in 2006 from epilepsy.
Katie, thank you for sharing your story and struggle to find the best treatment for your brave son, Connor. How can we help support the passing of this Legislation?
You are wonderful mother and person to advocate for your child and others like him. Don’t let those who won’t try to understand get you down.
Being involved with children with special needs myself, I praise you for not only helping your sweet boy, but so many others with this journey. We are so proud of you in Loranger! Keep up the fight!
Thank you for sharing! I am with you 100%! My son Grayson has Lennox gastrut syndrome which is a rare seizure disorder uncontrollably by meds! He has autism and cerebral palsy! We need the bill to pass so our children can get better! I have had to order a new wheel chair due to regretion and limit to what he can do physically now! Please Governor if you are reading this pass the bill for our children’s sake!
Please keep fighting! We’re cheering you on in TN! My daughter has intractable status seizures and we’ve recently started trying new meds and they’re terrible… the side effects are infinitely worse than medical marijuana, and what’s worse, they aren’t working. The drug abusers will get their drugs regardless, it’s our children who suffer & as you said, those who are fighting your legislation have no idea what any of our worlds are like or they would support it. Praying for progress for you guys!
Prayers for you and your sweet boy. Nothing can keep a mama bear from protecting and helping her baby. xoxox
I’m a wife and mom from Belle Chasse, LA only alive because of this plant. I had a botched brain cancer surgery 7 yrs ago at West Jeff Hospital. I was left legally blind, totally disabled, with brain damage , having Grand Mal Seizures daily. I tried cannabis for the 1st time in my life 3 yrs ago and it saved my life. We need full legalization because this entire plant heals us.
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