I told my Mom that for some reason I can’t remember a thing this past week; like, it’s really kicked in- the whole fumbling for words, completely losing my train of thought. That happened all the time at the beginning of adding Keppra but now it’s back to where I’m speaking coherently and intelligently and then just stop. Just stop mid-sentence and think- what the hell was I trying to say? What was I even talking about? That feeling of panic because I seem like a lunatic after sounding so educated. Lol Oooooh, bad news. As a person who’s valued and communicated the importance of words as a profession, fumbling over them doesn’t set well with me.
Anyways, she asked if I had too much on my mind considering my Video EEG is next week and I’ll be spending 5 days in the hospital. Nolan has to go to school. My husband has to work, care for me and sleep at the hospital. And my parents have to visit me while shuttling my 3 year old to his activities and entertaining him for hours. Not a big deal- all three parties assume the role willingly (thank God) but I know it’s a sacrifice so we can do all this medical testing.
And I think my kid knows it too. We are honest with him; he knows what an MRI looks like/sounds like. He’s seen my EEG electrodes before. He knows what a Secondary Generalized Focal seizure looks like (hasn’t seen my Grand Mals). And I always advocate for the knowledgeable side when it comes to my son. There are only 3 of us. He has no sibling to comfort him, answer questions or distract him from the realities of Mommy’s life. Instead, he’s been one of my caretakers from the beginning. When Daddy would venture to work in the early stages to see how much of a day he could fit in before I’d call and need “support,” he would always tell my son- you’re the man of the house… take care of Mommy. I remember looking into that pudgy, new to the world face and pretending “We got this” so Daddy would leave.
Nolan’s been there since Day 1. Times when I’d set him in the crib and I’d lay on the floor next to him and wait out the seizures. Thankful he was way too small and innocent to comprehend Mommy wasn’t more than a dancing stuffed animal when he pushed the button. I remember the red, blue and yellow octagon gate (parents, are you with me?) that we kept in the living room for tough days as he got older and pulled that magic trick of speedy, elusive crawling. Lol But it was when he could walk and talk, he knew. I think he’d always known, or at least figured it out somewhere along the way, that there was something “special” about Mommy and he was sent to be my guardian angel.
In fact, I think I first realized it the day I felt one coming on and shuffled my legs back against the coffee table and then slid down to a seating position. We were just playing ball (well, rolling it back and forth- let’s not exaggerate our abilities) and I let the ball roll past me and sat down. He walked to me, squatted down and looked back up in my face and said, “You’re okay. I’ll take care of you Mommy.” It was the first time he’d looked at me like that and said it; he listened to Daddy and truly was the man of the house. lol Gosh, he was only 1 ½.
From then forward, we knew we had to be honest with him. This is what it’s called. This is what happens to Mommy. This is what your brain looks like/does. All those intricate, detailed explanations you’d think would be wasted on a 2 year old. Not so. And that’s why the brain amazes me. Countless times I’ve laid on the floor or sat down against a wall somewhere in my house and he’s squatted next to me with that “you’ll be okay” as I breathe and then have one… He’s grabbed my hand, put his arm around my neck and even put on his play stethoscope to see if my heart’s still beating. (Writing this makes me think- Gawd, I’ve been through a lot with my two boys.)
All of a sudden I forget my train of thought… Ah!, so here we are and I was going to tell you that Nolan’s peeing and poohing his pants again. (Thaaaat’s what started my conversation with my mom.) And I know it’s because of my hospital stay. (In fact, he peed his pants at school and then told the teacher, “Mommy’s going to the hospital next week so they can look at her head boo boo.”) He knows Grams is going to come watch him because I can’t come home at the end of each day and I think that worries him. We didn’t tell him any of the gory details: Mommy’s going off her meds so she can have big seizures while the Doctors videotape her and compare it to the electrical activity in her brain. Nothing about the possibilities of me wetting my own pants, shredding my tongue, foaming at the mouth while my limbs are contorted. Me already terrified. My husband and I have hid our tears and plastered on smiles when he randomly pops out of his room for a glass of water. Our voices overly loud and cheerful when we greet him.
But he knows; he’s my guardian angel. From day 1.
So Nolan, when I start to feel one coming on while I’m in the hospital, Mommy will think of you lying next to me, holding my hand, whispering “you’ll be okay. I’m with you…”
Yes, my lovebug, you always are.
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