Life, In This Together, Epilepsy & Being Human

They let me kiss her on the forehead while they held her… The sweet little baby girl. Her enamored parents. Being only a month old, hers reminded me of my son’s sweet face when he seemed so incredibly tiny and fragile. Breakable, yet little did I know how resilient he would be. And little did I know how resilient this sweet baby girl would have to be.

She wasn’t mine, but I was touching her – her chubby little fingers, all five of them, squeezing my one. The want to both eat her because of all that cuteness, and protect her because she was so tiny, consumed me. I starred at that happy face, those rosy cheeks, delicate sheer skin.

But I was suddenly overwhelmed… She was hiccupping, cute for a baby although remembering the jumps of my son’s chest when he would hiccup so hard, made me shudder a bit. It didn’t end with hiccups though. Her arms and legs started to pump outwards from each other. Opposite directions. And they didn’t stop… and I saw it. I saw the baby I just touched in such a peaceful, comforted state encircled by her mother’s arms, transform violently. I saw the forehead I kissed, crinkle, and the eyes that had stared open wide at me as a stranger, look through me instead of at me. Confused as a new baby always is, now haunted, not curious.

She was having a seizure… And I saw the squeeze around her Mother’s finger become unimaginably strong – beyond what a delicate, fragile baby’s grip should be. Typical of a tonic clonic. (I hate that word “typical…”) Almost superhuman… the same way my Mom described the times I’d gripped a handful of her hair when she’d gotten too close to me while I flailed.

That precious baby girl, her Mommy’s terrified face, her panic, her finger turning purple at the tip- my breath caught in my throat. I choked, heaved for air…

And then woke up.

Tears in my eyes. It was so real. It is real- maybe not for me but for so many other hopeful, doting parents. It may even become real someday as it did for my own…

I sat up, sweat soaked through my t-shirt. And I remembered the text I’d received earlier that day from an acquaintance about a friend whose baby was just diagnosed with epilepsy.

So many texts, emails, calls… Can you help? Can you get them in sooner? Is there a doctor you know??? “I can’t watch my baby like this!!! Megan, I can’t…” (the familiarity of using my first name although we’ve just met) and their tears. My heart shredded.

It was only a nightmare Megan. Not real. But “not real” for me… All too real for so many others…

That baby girl; I’d kissed her. She was normal. She gave me what I wanted to believe was a gummy little smile, but then she changed. She became the text, the email, the call, the hurt and desperate confusion.

…It was a while before I fell back to sleep, watching my husband, thinking about our son, trying to stop my mind from racing and listing all the things I want to do but can’t on my own… protect that baby… protect those babies Megan. Irrational to say the least.

Racing, always racing- against time, against fear, against this ugly disease… against those moments when it’s not possible to get in one more peaceful kiss on the forehead…

Oh God, what if she were mine?…

Find a cure…
 <— why I dream 💜


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Blog at

Up ↑

%d bloggers like this: