Holding Out Hope for a Better Life

My name is Erica. I am a 38-year-old public school art teacher. I have been teaching for over 10 years and love my job. Unlike many mothers with children with disabilities, I have managed to maintain my career. I feel very blessed to work with over 500 students in our town in Minnesota.

I have been married since 2006. My husband, Scott, is an outside sales person for a title company. He is the most amazing father. He has stepped up, when he could have run away. I admire his strength for completely doing this with me day-to-day.

Our only son, Grant, was about 6 when his first serious round of self injury began. He has some level of intellectual disability, autism, and Avoidant Restrictive Feeding Intake Disorder (ArFID) which resulted in a g-tube getting surgically placed in August. Below is just a small piece of my life story. I am writing regularly at erica873.wixsite.com/grant and share updates on Facebook at www.facebook.com/deargrant if you would like to read more.

Amy is my friend and neighbor. She was kind enough to let me share my story here today. We are seeking donations for our medical trip. Grant is on a wait list for a hospital in Baltimore, Maryland, called Kennedy Krieger. Please watch the video at the end of this post, and check out my site for more details if you are in a position to help. Thank you.

erica1

I was cleaning up my art room, like I always do. Pandora was playing “Fire and Rain” by James Taylor. I know this song really well. I might be able to sing along without the lyrics without them in front of me. Can you hear it now?

” Won’t you look down upon me, Jesus …”

This song triggers a variety of emotions. I sing along. Just in my head. I don’t need someone to walk in my classroom and hear me.

Taylor sings …

“You’ve got to help me make a stand
You’ve just got to see me through another day
My body’s aching and my time is at hand
I won’t make it any other way”

I push the tears back. I want to let them flow at this moment, but I don’t and I won’t. I have let them flow before. I have had deep, ugly cries in the last six months. I have done this in front of my son. I have done it alone. But, I have never let myself cry like this in front of anyone else. This song is triggering this feeling, but I push it down.

I feel regret and anger when I have cried like this in front of Grant. It makes me cry more. My anger builds with every piece of this of this journey. The tears flow easily if he hurts me and I am not talking about emotional pain. I have never had a verbal argument with him. He is not considered “non-verbal,” but he is not functionally conversational either.

erica6

erica5

erica2

He has attacked my hair so many times I can’t count all of the incidences. Even in one day, he has come at me over 20 times. It’s like he is trying to remove chunks of my hair. I am trained in something called “CPI” so I know how to release his hands from head. I have to press on his knuckles. My scalp hurts after he comes after me. After a summer of hair pulls, I eventually sacrifice my long strands for a chin length “do.” I resent him in that moment at the hair salon. I tell myself it’s just hair. It is not me or who I am as a woman. It’s just hair. I eventually purchase hair turbans off of Amazon to protect my poor scalp. Cutting my hair doesn’t prove to be enough to keep him from hurting me.

He has tried to hurt my eyes. This is how it all started. He would push his fingers into my tear ducts. It happened so quickly. It’s hard to explain how anyone can get to your eyes so quickly.

Today he mostly kicks me. He hits me. He has bruised my eye area. He has scratched my skin and, more recently, he has learned how to head butt. This might be the worst new behavior. It comes out of nowhere. I can be putting on his diaper or he can be sitting on my lap. I might lean over to fix something and his head, with a helmet on, comes at my face so quickly. I can’t get out of the way. I bawl.

erica3

erica4

There was a day where he hit me so hard, I question if there is blood running down my face. I luck out, it’s only mucus. My nose feels broken regardless. It’s hard to hide my emotions. Tears flow easily. I want to hide. I can’t show him how upset I am in these moments.

This head butting issue really irritates me. On Halloween, his head hits my mouth. I thought he had loosened a tooth. I am not sure if he just caused me serious dental issues. I am hysterical. I grasp my face in horror. WHAT DID HE JUST DO!? How can a 9 year old be this violent? He stares at me as tears make my mascara drip black lines down my face. I am flushed. My lip is busted open this time. I have not overreacted. I might have my teeth still, but that was truly painful. I fall to the floor sobbing. He just stares at me. He might have said something like “mommy sad.” Yes, Grant. Sad is only the beginning of the emotions I feel in this moment.

Deep anger fills me. I don’t lash back. But, every cell in my body wants to fight. But, I can’t. There is no point. He doesn’t understand what he is doing. He just sees his mother crying. To him, this is interesting. So he will do it again. I have sealed that destiny with my outward emotions. But, I can’t stop in these times. I am getting hurt. I am hurt. I cry. I am so unbelievably tired of this.

Attacking me…this only a piece of what is happening in my home on a daily basis. Some days are worse. Some are better. I ask myself constantly “What is worse than this?”  I mean, I quite literally in my head run through a game called “What is worse than this situation?” We have to find answers. We have to move forward. I remind myself that we are lucky he is alive. We wait patiently for his turn at the hospital. I’ll do the best I can with each day as it comes. Maybe tomorrow will be better. Maybe. I will hold on to the hope I must keep in my heart for the three of us for a better and easier life.

Erica

let's tell stories Every life has a purpose. Every person has a story. What's yours? This is a quiet place to read stories, a safe place to share and see the significance of your story. Come on in. Get cozy. Relax and enjoy! Read below
Menu