Four Girls Later

One year ago today I sat in a room at UNC children’s hospital gripped by fear. We had just checked in knowing that they were going to do an EEG for my youngest daughter to detect if there was any seizure activity taking place. When I tell you all reason and sensibility had left me, I mean ALL reason and sensibility. To this day, I am thankful for my second daughters kindergarten teacher and aide for being probably the only source of consistent calm and perpetual joy both my older daughters got in that uncertainty.

A little backstory, it was suspected that she was having infantile seizures. Also, friends… why do these things ALWAYS transpire when your spouse isn’t around?? Please know everything I say regarding this is to the best of my ability. If I speak incorrectly or from a place of misinformation, that is not my intention. I am only sharing my very limited experience, perspective, and opinions.

Those opinions are as follows:

1. Someone, somewhere, needs to be educating people on infantile seizures. It is my understanding these things CAN be very subtle and easily go undetected. Knowledge is power, early detection is power, and an informed parent is power.

2. I am 100% a let’s live in this reality person. Something I both admire and question in some of my favorite people is their ability to see the world through rose colored glasses. Having said that – People need to hear success stories! During this time of uncertainty, I needed to find SOMETHING that says this is going to be ok.

3. When someone is hurting, particularly fearful for their child, I’m not saying walk on eggshells… but have mercy think before you speak. I can remember an ER doctor at our local hospital telling me that because IS can go undetected for an extended period of time a common indicator is regression… and the example she used was a baby that use to socially smile will stop. So basically watch for regression. Y’all. I sat staring at my daughter for hours after this, willing my brain to memorize every turn of her mouth. Praying that it would be cemented in my memory if ever there came a day that she smiled at me for the last time.

4. Although as it turns out her “appeared seizure-like activity” was related to something else not brain-wise (which if y’all have any questions regarding food allergies, FPIES, and breastfeeding.. I’m your girl) I know there are tons and tons of mamas that didn’t get the same “all clear”. My heart and prayers are with you as you continue on your own journey. And for the mamas that are scouring the web for pictures, videos, support groups or something that resembles what you think might be happening… keep knocking on that door until you are let in. If you feel like something isn’t right, keep showing up for your child. Let your concerns be heard. Keep pushing. Pediatrician offices, hospital EDs, children’s hospitals… whatever it takes.

I can still become emotional 365 days later gripped by those paralyzing feelings. However, the truth is – I’m writing this as I watch my happy, talking, giggling, smiling, scream if I don’t get exactly what I want, walking – 14 month old sleep. Waiting for her to get up to tackle that schedule of school pick up, play date pick up, ortho, tap, and late night softball game. I would be dishonest if I said I live every day in light of this scary time. However, this time changed me as both a mom and a person. This fear made me a mom that still messes up but tries to rebound quickly. Made me a person that is more understanding, patient, and grateful. So can you do me a favor today? If you are lucky enough to have people that you love in your life, can you take a minute to appreciate them? Can you slow down and steal a few minutes savoring what’s right in front of you? Can you take a minute to love your people for all of who they are? Can you take a minute to appreciate the curves in their face when they smile?

Shine your light.

Xoxo,

Sara