Raising Brain Tumour Awareness: My Seizure Story

A fellow blogger’s writing about her brain tumour greatly helped me through mine.  In order to pay it forward I have wanted to help by spreading awareness and by sharing my story.  Parts of the story are hard to share because even now, almost three years since my surgery, there are raw cords.  However, I believe that sharing the story is an integral part of the healing journey. 

In my attempts to process what our family went through during the first few months after C’s birth, with his health struggles and with my brain tumour, I turned to art.  I wrote and I painted.  About a year after the surgery, I also did a self-constructed six week art healing quest (more on that in a later post).  The seizure was one of the hardest aspects to process because of the complete lack of warning, lack of control, the unpredictability.  So, unsurprisingly, the topic of seizure came up a lot in my writing.  Below is one piece of writing I did about the seizure during that time.

Seizures and Chameleons

I wake, not knowing I have been asleep, but knowing there has been a shift in time; a step I missed. Things don’t look like they are in the places I have left them. In fact, have we switched rooms? Something is off and why are these nurses trying to get me into a different bed? What’s wrong with the other one?

J is against the wall, pressed against it; his face so white, it is like he is a chameleon trying to blend into these surroundings. He is holding the baby in his arms; so white, eyes wide. Heart sinking, I struggle to form the words to ask the question I don’t really want the answer to. “What’s wrong? Is the baby okay?”

It’s the second time I’ve asked this in about eight hours. Last time it was the doctors who went all quiet and eyes wide. On hitting the magic 9cm dilated point, they had popped my water to get things going. Then they had realized, “Oops, he’s breach and you need an emergency C-section.” It meant the birth wasn’t how I imagined it and a bit stressful when he didn’t cry right away when they took him out.  I had been warned, though, to be ready to be flexible when it came to childbirth. So I was flexible.

This problem is a bit harder to figure out. The feeling like they have switched my room when I wasn’t looking, and that look on J’s face. I’ve never seen that look on my husband’s face before. I can’t read it.

“The baby’s okay,” J manages to reply though it takes him so much effort it comes out almost as a gasp. Pieces are not working together, this room, the beds, his eyes. What is wrong with this room? Our stuff is here but why am I moving beds, what are the nurses fussing about?

Then I figure it out. That unfamiliar look on J’s face: it’s insecurity. My always-confident husband is at a loss of what to do. He’s scared. “Damn it J. Tell me what’s wrong.”

Glancing around, perhaps at the nurses, J tells me, “You had a seizure.” I look at him, my brain not able to process this, not due to residue seizure activity, but due to the absurdity of the statement. “What?” is about all I can manage.

“You had a seizure,” J tries again, “and you have to go downstairs.”

The ‘you’ strikes me, “You mean we are all going downstairs? We have to change rooms again?”

“No.” J clarifies. “Just you. C and I are staying here.”

I blink. I cannot process this. My baby is six hours old. It is the first night with our first baby and J, who has never even changed a diaper, is going to have to fend for himself. And me, who has dreamed of being a mother ever since I can remember, I am going to spend the night somewhere else by myself. What about my time to “bond” with my child?  And seizure?  Seizure went far beyond the “prepare to be flexible” warnings.  This isn’t how it is supposed to go.

I try to think back, how did we get here? What do I last remember? I remember looking at the clock. It read 12:25 am. I was lying in bed holding the baby and coo-ing to him. I told J I felt wide-awake so he should try to sleep. He laid down on the mat on the floor to do so. I was holding the baby… How did the baby go from my arms to J’s arms? Was I holding the baby while I had the seizure? Did I drop him? Did I squeeze him?

“I don’t want to go,” I state but the bed is already being rolled away. I am told I have to go because this floor doesn’t have the staffing, and I am now on one-to-one seizure watch. I close my eyes and they take me away. J holds the baby and watches me go. I imagine him fading into the white walls behind him as I listen to the elevators close.


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7 Responses to Raising Brain Tumour Awareness: My Seizure Story

  1. Valerie says:

    Very sad story and I am so sorry you had to go through this.

  2. Arwyn says:

    Oh my Ren, reading this takes my understanding of your experience to a whole other level. My heart broke for you all over again. I am so greatful that looking back, it all turned out ok. We still have you and C, and now even Q. Xo

  3. Having something like this happen is terrifying enough, but 6 hours after having your baby. Can’t imagine.

  4. Oh my gosh, you must have been so confused and scared. I’m so glad you’re okay now.

  5. Heather says:

    Being separated from your baby after birth is heartbreaking. I remember having those feelings when my first was born with serious heart defects and whisked away. I remember being able to tell something was wrong by the look on everyone’s faces but no one would tell me what. Adding in your own health scares, I can’t even imagine!

  6. I just saw that you are a blogger Renata. Congrats on the nomination. I had no idea what you went through. I’m so very sorry. I’ve seen it a few times and it is very scary for everyone involved. I’m so glad that you are ok and thank you for sharing your story. Looking forward to partying with you on June 12th.



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