Have you ever watched a baby seize? I have.
Have you ever seen a child’s body stiffen, jaws tighten and it’s tiny little frame shake uncontrollably? I have.
At first, it’s a little scary. You want to do something to help, to stop this onslaught of intense discomfort, but you can’t.
All you can do is wait… Wait until its over.
All you can do is pray… Pray that it lasts only seconds, when in reality it may be minutes.
All you can do is hope… Hope that the next one won’t be as bad.
Hope…..For a miracle.
In those moments, your left a little helpless trying simply to comfort this innocent child as she moans.
You listen to the moaning, you watch her eyes shutter, you cringe at the fact that she is more helpless than you could ever imagine being.
It’s painful to watch.
Over the years, you get used to it, but it never gets easier to experience.
If you love this child, as my family and I love my 8 year old niece, you learn to adjust to the discomfort so that it’s not something that causes intense fear every time it happens. But it never gets easier… Not for her and not for us.
Katherine Camille Kleinschmidt was born in February of 2008. Before her birth, we were all aware that she would have a rare brain disorder. Instead of opting for an abortion, my sister decided to give this child the life God intended for her.
The doctors didn’t expect her to live long, but she’s here 8 years later. She’s beautiful. She’s full of life.
She’s your typical 8 year old despite the fact that she’s never been able to walk, she doesn’t have her eyesight and she cannot communicate through traditional language. She doesn’t eat orally. She’s fed through a tube every 4 hours and can’t roll or turn over. Despite all these things, she’s just like any other child.
She loves cartoons and has her favorites! Her and my daughter sit together for hours watching Dora and Strawberry Short Cake.
She’s spoiled behind her mother and her siblings and lights up when they come in the room!
She loves to be around people, to hear our conversations and butts in every once in a while just to let us know how she’s feeling.
Her cousins love her and she loves them. She listens as they play, kicking her legs in excitement.
She’s just like any child!
Because of her disorder, my niece has seizures all day every single day. They range in intensity, and she experiences every level from dawn to dusk.
The doctor prescribes pharmaceuticals which dilute her quality of life. Don’t get me wrong, I appreciate the relief it gives her, but the side effects are evident. Have you ever seen a commercial for sleeping meds and at the end of the commercial they list a minutes worth of side effects….. Yay… well… imagine that for seizure meds. It’s intense.
We have all prayed for something less intense. Something that will give her relief and not a million side affects that disrupt her level of function.
We have all prayed for …… HOPE.
Now, in 2016, that hope is being realized for so many individuals and children suffering from seizure disorders. The only problem is that this hope comes through the use of medical marijuana, which isn’t legal for these purposes in Louisiana.
Even if my sister were to buy the right type of CBD oil, albeit illegally, she wouldnt be able to administer it to her child without doctors instructions. Being that the drugs my niece is currently on are so intense that it would take months to ween her off, offering an alternative in medicine is dangerous without the guidance of an experienced physician.
So, on May 3, 2016 our Senate will be voting for Senate Bill 271. This bill constitutes a turning point for the American People. This is a bill of hope…. Hope for my niece and millions of other people suffering from medical conditions that could be ebbed by the use of medical marijuana.
I am writing so that maybe you could understand that this marijuana movement isn’t a slippery slope. It’s not about you and I, the people who live seemingly normal existences. It’s about the people you don’t see every day because their illnesses keep them bed ridden. It’s about the people suffering with no cure. It’s about the people praying for a medication that doesn’t leave them feeling doped up like the common pharmaceuticals peddled to us every day. It’s for the people who believe in a better existence for everyone!
I support Senate Bill 271. If you do as well, please go to Louisianacannabis.org and click the link that says “email now”. Its simple! It takes 1 minute for you to make a difference!