Dear Texas doctors,
Do you remember when you told us to brace ourselves for the seizures? You handed us a prescription for two anti-epileptic drugs. We fed them to our baby, not knowing that there were so many things that you didn’t tell us. You didn’t let us know that she would sleep all day. That these medications combined, would cause a crystal lump under her tongue that she would need surgically removed, the size of a nickel. You didn’t tell us that the medications could cause her breathing to become so shallow that I thought she was dead. You didn’t tell me that she could become hooked on them, like a drug addict. You didn’t tell me that there was a chance that these medications would never work.
Do you remember when you told me that she needed a basket of medications for panhypopit? That she would never regulate any of the hormones essential for human life, so I had to pump her full of synthetic versions of them instead?
When the seizures started, you didn’t tell me that the rescue medication that you were giving us was a benzodiazepine. That is was just a fancy name for rectal valium. That my daughter would fall into a comatose like state after taking it. You didn’t tell me that after two doses of this medication, my child would need to be intubated because she would no longer be able to breathe. You didn’t tell me that the rescue medications- wouldn’t work either. That this was your best effort to stop her seizures, and it wouldn’t change a thing.
When the first benzo didn’t work, you didn’t warn me that the plan was to add one, two, three more. You told me this was the only plan. You didn’t tell me that my baby wouldn’t be able to move her arms or legs anymore. That i had to count her breaths. That the seizures would only get worse. That eventually, because of the seizures and the medications combined, I would have to see my child shades of blue and grey and cold. You gave me the green light to give my child these things when she was ONE. I trusted you. I am not a doctor. I trusted what you said.
When she got to the point of having status seizures- seizing sometimes a hundred times a day, do you remember what you told me? How she would be a “perfect candidate” for the brain surgery, to remove even MORE of what little brain she was born with in the first place? Do you remember how you told me that maybe, maybe she wouldn’t come out of it alive.. But you would do your best. Do you remember when you told me that you would treat her as if it were your own daughter on that operating table? Do you remember when you did your best to make me trust you? That you told me that she would NEVER come off of these medications? That this was her best shot at a life? That without this, she would die? Do you remember watching me cry and telling me that I was doing the right thing? I was nineteen.. I was naive and I listened to you. You made me trust you. Do you remember me now?
Do you remember when you told me that she would never see?
Do you remember when you told me that she would never be able to show emotion, with so many parts of her brain missing?
Do you remember when you told me that her left side, would be paralyzed forever?
Do you remember when you told me that she would never speak?
That she would never develop, never thrive, never sit??
Maybe you will remember me when I remind you of how I called you, after I made my mind up. You laughed at me on the phone. You told me that it would be in vain, even that is would be selfish if we decided to try cannabis instead. You told me that my daughter had a structural problem in her brain, and compared it to dravet. You told me cannabis could never work for a child like her. You told me that when we came to colorado, tried cannabis and failed, that you would be waiting for our call at your clinic and you would take us back. The tone of your voice as we said goodbye… You were condescending. You laughed at me. You remember me, I know that.
Perkins, Scott, and the team at CCC care and DCMC, I am talking to you.
You wouldn’t recognize her if I showed you a photo of who she is today. She is THRIVING here. She is doing every single thing, that you said she never would.
Would you laugh at us now, if I told you the basket of pills was long gone?
Would it make you laugh if I told you that it has been over FOUR months since her last seizure?
How about if I told you that her pituitary started to work on its own and when it did- those medications that “kept her alive” almost ended up killing her when her brain swelled up from too low of a sodium level?
Would you say it is some sort of fluke, that she calls me mama? I get to listen to her speak every day. Would you laugh at us now?
How about if I told you the joy in my heart that I feel when I get to see her SIT like you said she never could? How about now?
If I had trusted you, texas… Hundreds of years of unjust history would have continued, and directly impacted my family. My daughter. Myself.
I will protect these roots that have given my baby girl life, like you never could. This is our right.
How many years of TRUE medical negligence could nova have avoided, how many consequences, ambulance rides, doses of your pills… How much of it could we have avoided if I would have known the truth sooner?
To whoever takes the time to read these things… Does this anger you yet? Each time that a doctor, a politician, a group of individuals stands against the use of cannabis for children like nova… A baby, or a five year old, or a teenager that could have lived, has their last seizure and goes to heaven to be with God eternally.
And some will say… “Show me the studies.” No, how about this. The burden of proof is on YOU. Show me the studies, on how heavy doses of benzodiazepines combined with a minimum of 50 seizures daily will impact the developing brain. A one year old. A two year old, a five year old. I can tell you what that does, that is how our kids die.
This is my narrative to the world. I am angry. Not for my daughter, that now has a new lease on life. I am angry to know that so many other kids like her, are going through what we did.
I believe that cannabis should be used as a first line of defense against epileptic seizures. And not only CBD oil- that doesn’t work for so many kids. Full spectrum oil needs to be safely manufactured in a lab setting, tested, safely packaged, and provided to these suffering families just like the dangerous pharmaceuticals that are already widely available to them.
Our kids aren’t getting high. They are getting help.
Doctors in texas… I will remember you for the rest of my life. Thank you for pushing me to the edge, far enough so that I jumped and the net appeared.
On her 121st day of seizure freedom,