Our America

Today I am sad, I am scared for America; my home, my family, my future.  I am not sad necessarily because Trump won, I have looked deep down into my soul and really believe I would have been just as sad even if the other party had taken the victory.

I am sad because this election has brought out the absolute worst in our people.  One nominee opened the floodgates of hate, showing many people’s true colors in regards to anyone who is or thinks different than them be it their race, religion, economic standing, sexual orientation, or even their gender.  I have seen so much hate, so much animosity spewed over social media this past year and it has made me look at many people I love and hold dear with a new set of eyes.

Does every person who voted for him see with this set of eyes, believe and condone this level of hate? No, I do not think so.  Some of the people I love the most voted for him, and I have searched in my heart to see if I can imagine them being filled with this level of darkness.  I can’t.  But I fear they are the minority in his followers, and the majority is what my nightmares are made of.

The other half saddens me too.  The ones who do not care that it is not her voice that they will be standing with, instead it will be ‘big money’; the lobbyists, the corporations, the foreign entities that scare me shitless that will be running this country.  Their money paid for her campaign, and their money would pay for the policies she would fight to put in place.

And I’m not just sad, I am angry.  I am angry at both sides.  There are over 300 million people in this country, and these are the two that we decided to choose between.  I am mad that no matter how often it has been proven that a two party system is absolutely ridiculous and even harmful to our nation that we insist on keeping it.  I am mad that because I chose to deviate away from that line of thinking I am told that my vote must have been a protest vote, and that I somehow harmed my country by doing so.

Here’s the thing, I don’t vote for the people.  I vote for the policies they are going to put in place.  I vote for what I feel our country needs, and what I feel would be best for me and my family.

That means no to big money.

That means yes to universal healthcare.

That means yes to equal rights and equal freedoms no matter your race, religion, sexual orientation, or gender identity.

That means yes to a plant that is saving my babies life and could very well save countless others.

Did the candidate I chose tick off all of those boxes? No, but that candidate checked off all but one.  Is the perfect candidate for me out there?  He was, but unfortunately he asked me not to vote for him and I could not in good conscience vote for who he asked me to.

So here I am: scared, angry, sad. And the one thing I am doing is praying lots of prayers, for the next for years and what they will do to the future of the land that I love. We are an America founded on immigration, founded on freedom, founded by refugees: the tired, the poor, the huddled masses.  And I hope we never forget it.

1 in 20,000

1-in-20000

November is epilepsy awareness month, a whole month devoted to spreading awareness to this awful condition that effects 1 in 26 Americans. An estimated 65 million people worldwide are affected by epilepsy and 2/3 of those people do not have a known cause to their seizures.

In Austen’s case we know the cause, an SCN1A mutation known as Dravet Syndrome, the condition hits 1 in 20,000 people worldwide. In kids with Dravet Syndrome seizures tend to start before or around 6 months of age, they start out as tonic clonic (grand mals) and then the child eventually starts to develop new types of seizures in their second year of life. Dravet patients are characterized by having status seizures, a seizure lasting over five minutes, that are notoriously hard to control and resistant to anti-epileptic drugs. Most Dravet kids end of being severely cognitively delayed and many end up being somewhere on the Autism Spectrum. Dravet kids have a 16-20% chance of dying before the age of 20.

Dravet Syndrome is awful, Dravet Syndrome can kiss my ass.

As I write this I am looking at my 17 month old baby; this baby who is completely cognitively normal. She walks, she talks, she sings, she plays, she climbs, she socializes. I am looking at this baby who earlier today was running, laughing, and getting into trouble but is now asleep and exhausted thanks to a non-convulsive status seizure she had right after her bath this evening. Thankfully THC stopped her seizure, but it is taking more and more to stop them each time. Today I almost gave up and brought out the Diazepam (a gel form of valium) but she thankfully stopped seizing right as I was about to administer it.

My husband keeps telling me to stop being pessimistic. He is convinced that THC and cannabis are going to be a miracle for our girl. Maybe he is right, maybe it will be. I hope it is. But sometimes it’s easy for the negativity to take over. For the anger and the bitterness to bubble up and come to the surface.

You see, I am mad, I am angry, I am devastated that this condition is ransacking my baby. I hate that she has to suffer, and I hate that no matter what I do I can’t seem to stop the seizures completely.

Tonight I feel scared and I feel defeated, but tomorrow is another day. Tonight I might cry, but tomorrow I will pick up the pieces and continue this fight to help my baby.

I will do it because she deserves a chance, she deserves hope, and she deserves to have people in her corner fighting to give her those things.

And if I won’t do it, who will?