It’s been one year.
One year since we rushed you to the hospital in the middle of the night.
Daddy held you in his arms in the backseat. I could hear him telling you that it was going to be “ok,” he was trying to keep his voice calm, I was crying, Daddy telling me to drive safely; trying to soothe me from the back seat. Did you hear him? I hope you weren’t scared.
I was so thankful there was no traffic on the roads. I prayed silently, “please let there be no cops out,” as I drove like a madman, trying to get to the hospital as fast as I could.
“Please let her be OK. Dear God. What is wrong with my baby?” I said over and over again.
I never imagined what life had in store for our family, and I wasn’t prepared for how much our lives were going to change.
It’s hard to believe that it’s been one year since that last night of “normal.”
but, I look at you now, and I see the baby I’ve always known.
You have the same bright brown eyes.
The same brown hair.
The same giggle.
The same dimples.
This makes me feel relief, that maybe you can make it out of this thing without any scars.
but, I know you’re not the same, you can’t be.
That makes me sad.
You’ve been changed, in ways that are just not fair.
In ways, I wish I could have protected you from.
In ways I would give my last breath, if it meant you never had to experience this.
I’m am so sorry baby.
I’m sorry that life dealt you this disease.
I’m sorry that your body doesn’t feel like your own most days.
I’m sorry for all the times we had to hold you down and make you do things you didn’t want to do.
I’m sorry for all the times you felt so completely out of control and helpless.
I’m sorry for any pain and discomfort caused to you, because of decisions me and Daddy had to make.
I’m sorry for all the time lost to fun, and just being a kid, because you were stuck hooked up to a machine.
I’m so sorry that I can’t suffer in your place.
You have been through so much this past year, and I want you to know that I am so amazed by you.
This year should have knocked you down, but it didn’t. You fought hard, and you still do.
We share your journey with the world, but they don’t really know how much you struggle daily to do simple things.
but Daddy and I do.
We see you, and you are not alone.
We will always be with you, fighting.
People tell me “I’m a strong mama,”
but I’m not strong.
I’m just doing my job.
I refuse to let this all be in vain.
I will raise awareness.
I will share your story.
Knowing all that you’ve gone through, and seeing you still smile, laugh, jump and play-
you are the strong one.
Your strength inspires me, Maddilyn.
I want to remind you of one thing:
You are not “Autoimmune Encephalitis,” you are Maddi.
This disease does not define or control your destiny, but rather sharpens your character.
You will fight this madness, and come out stronger.
You will beat this.
One year ago today, our life could have taken another life altering path,
but God allowed us an extra year with you.
Let’s make year two even better.
I love you with every ounce of my soul.