4:15 am. Sofia comes running into my room. “Mom, it’s happening again.” Immediately I shot out of bed. I knew what “it” was. Gracie. Gracie was having a seizure. I run to their bedroom, Sofia closely behind, and I see my daughter, my miracle baby, Gracie, laying on the bed convulsing. Her entire body had taken on a mind of its own. There was saliva foaming at her mouth, followed by sounds of , well, sounds I have never heard before. Gasping. I quickly turned her on her side, I pull her hair out of her face. I make sure she did not wet herself, which happens often during a seizure. She did not. “Sofia, go grab the medicine!” Sofia knew right away what she had to do.
“Gracie, Gracie, can you hear me. Gracie?”
More convulsing, gasping for breath.
I had to stay in control. Joe was at work. Quite frankly there was no time for me to think of anything else other than making sure Gracie was laying on her side, while Sofia went to grab the medicine.
I grabbed the medicine, tore open the needle, fumbled with the vial of the magic stuff that will take her out of the seizure. My hands were shaking. How in the hell am I supposed to have a steady hand? Where is the applicator? I cannot do this…..”Sofia, help, hold this for me!”
“Okay Mom, whatever you need.”
By the time it took me to prep her “recovery med”, Gracie was out of the seizure.
It took a few minutes for her to come to.
“Gracie, do you know who I am?” I have learned we have to ask these questions because if she does not know, then we need to head to the ER ASAP.
“Yes, my mother.”
“Who is that?”
“Sofia, my sister.”
“Who is that?”
“Why is the cat on my bed?”
“Do you remember anything?”
“I remember I hate Vinnie.”
And now I can relax. She is okay.
This is Gracie’s fourth seizure. This is also the first one I witnessed. Two have been at school and her very first one, we walked in on right as she was coming out of it.
I will never forget seeing her there, laying on the bed, helpless, shaking. This image will haunt me until the day I die. Yet, I know this will not be the last.
If you are reading this, please, for a moment, picture your son or daughter, your loved one. Whether they are three years old, thirteen years old, twenty-three years old or forty-three years old. Picture your little boy, or little girl, your niece or nephew, laying on the bed (and this is if you are lucky. Seizures do not always happen on the bed.) Shaking uncontrollably. Your son, daughter or loved one take on a form you have never seen before. You are helpless, you are their strength. You are your weakness….and while you are picturing all that, tell me what you would do? Because, I know I need to do better. There is no room for mess ups where seizures are involved.
Sudden Unexpected Death in Epilepsy (SUDEP) is a real thing. Although rare, it is real.
I find my self questioning everything. Why me (why not me, right?) I am not strong enough. I hate this. I hate this so much. Everything in my life now is revolved around Gracie and her seizures. She does not deserve this. No one does.
Sofia, my God, Sofia is my hero. This little girl has seen it all. She is feisty yet shy. She is determined yet a follower. My mind is all over the place, but what I need you to know, especially if you have the pleasure of knowing Sofia. She has seen things that no ten-year old should see. She has seen it all with Gracie. If she seems “out of it” during school, or maybe a little bit quiet, or stressed, or perhaps wants to punch Christopher in the face, please understand. She has the weight of the world on her shoulders, and as much as I try to take some of that away from her, she has seen too much. She has changed, we all have changed.
We have been broken.