Morning routine drawn, happy pictures taken and my bright, beautiful 5-year old headed off for her first day of Kindergarten. As my husband said on repeat as we drove him to work immediately following “That was big. Whatever just happened was really big”. And he is right in bigger ways than either of us could have expressed on that short drive.

You have a baby and in those moments when you are at a loss, when they are inconsolable and you are beyond sleep deprived in some other orbit from the rest of the world, you find yourself longing for the first day of school when someone, anyone other than you, will be in their attendance for 8 hours at a time.

In many ways, I knew she wouldn’t cry or fuss on the first day. She was too darn excited. Four days earlier she actually had a meltdown because school had not started yet. Other than a ‘shy moment’ when we introduced ourselves to the school principal, she slid onto that blue kindergarten carpet without issue. Just a few feet away I was using all my effort to hold back the water in my eyes and kept wishing to drop my sunglasses on my face so as to not distract her with my own flooding emotions.

A lot has happened since she graduated from preschool a few months ago and the result has left her relatively unaware while I am still in recovery. It started when she had a seizure in May that lead to an ER visit. “Febrile seizures” they said, followed by: “Chances are she may never have another. Just make sure to reduce her fever when she is sick.”

We went home and life continued almost entirely unaltered other than a story to tell about the horror of watching your child go from simply sick to seizing followed by a hysterical ambulance ride and how touched we were by the supportive community that rose up to help us. We told the story from a place of relief– chances are she may never have one again. That phrase helped me sleep at night with her blissfully in the other room.

But, that phrase was not for our family. Within a few weeks, she had another seizure. This time it was without a fever although that arrived a few hours later. Basically, instead of a fever indicating she may get a seizure, the seizure was the warning of a nasty bug that lasted over a week. Then she had another seizure in the middle of the night a few hours after we returned from the ER. That was how our summer began.

I was undone. Suddenly, my semi-lax parenting style that I felt allowed her plenty of space to grow and my lack of concern when she got sick hey- it helps build her immune system, right!? were tossed out the window. I felt hyper-aware of everything, completely on top of her and uncomfortable with myself much less our relationship.

The following weeks of summer followed suit as I spent more time with my children, yet in a state of anxiety and fear. Attempting to do whatever next thing I could think of to keep her from another seizure or to distract myself from the awful feeling inside. While she didn’t have another one during the summer, it was hardly because of my worry and stress.

Then we went on a trip. A big one for us. Two and a half weeks that involved flying across the country to drive up and down the East Coast. In the first eight days, we drove for six. Typically about 2-3 hours per day that we attempted to overlap with our toddler’s nap, but we started learning the hard lesson that small children aren’t nearly as motivated to sit blissfully looking out at scenery listening to self-help books on tape as we were. Our love of road-tripping that shaped our 20’s and early 30’s was vanishing fast.

Did I mention, throughout it I was an emotional mess? Everything felt big and wrong and icky. Tantrums from either child felt larger than I could bear. And every transition from car to house to car to hotel was more dramatic than it needed to be. I attempted to relax on the days that were ‘relaxing’ but threats to my children seemed all around. Watching my daughter in the pool, with her new love of putting her head underwater had me sitting on standby with eyes locked on her every twitch, ready to rescue her. I had never felt this way and suddenly my empathy for the helicopter parenting style soared. I was torturing myself.

At the end of our time in the Poconos, we planned one more trip around the lake on Great Grandpop’s Golf Cart that my children were obsessed with. My daughter ran into the cabin where I had been packing and said “Mama- we want YOU to drive the Golf Cart”. Half teasing, I said “Oh, I have never driven a Golf Cart before. Should I be nervous?”

Her wide eyes looked up at me and with a slight giggle she said:

“Mama, YOU can feel anyway you want.”

At that moment, I was no longer looking at my child, but rather an angel with a specific message. YOU CAN FEEL ANYWAY YOU WANT. I knew I wasn’t nervous about driving a Golf Cart, I was nervous something would happen to this sweet girl in front of me who was walking around with a piece of my heart inside of hers. Her words shot through my entire being and I suddenly felt willing to heal from our summer. Willing to feel something other than fear. I craved feeling the joy she clearly held and I finally let her love infect me.

That was the first step, opening up to feeling differently, feeling better. Then a couple of days later my husband and I had one of those ‘serious’ should we invest a chunk of change in my business or not conversations and somewhere in there it came out that I was blaming myself for our daughter’s seizures. That I couldn’t control them. That I failed to keep her safe.

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As the words poured out, I didn’t realize the truth they had held deep within me. My husband grabbed me and said “It was not your fault.” over and over until I was a puddled of tears letting all the self-blame come spilling over.

The logical side of me knew that I didn’t cause her to be sick, much less cause her to seize. In the moment of each seizure I had risen to the occasion in the best way I could, pulled together and present for her shaking yet stiff body as I frantically whispered to her I am with you and please come back to me. Eventually, her body would crumble into my arms both of us defeated. Meanwhile, that ego-based creature deep within gnawing at my soul that wants to control everything, told me something false: I had failed my child. With my husband’s words, I felt the next step. I was starting to let go. It was not my fault. 

Soon after our ‘big trip’ finally became a vacation as we found ourselves with toes deep in the sand, the sun drenching us as we played in the ocean or pool together. We experienced a place we never knew existed with inviting warm water, blindingly white beaches and the perfect balance of breeze. The rawness was slowly washing away and I found myself a layer deeper, somehow exfoliated by emotions that had spent the summer overwhelming me.

Returning home to the back-to-school countdown, I finally felt refreshed and ready to deal with whatever the new year has in store.

Will my daughter have a seizure again? Maybe. Maybe not.

Will she be in a school that will take care of her and will do their best for her if she has a seizure? Yes.

Will she get sick? Probably.

Will I blame myself? I hope not, because that will mean I once again am trying to control the uncontrollable.

Dropping my daughter at school that first day was very different than I anticipated just a few months ago. Our summer brought lessons of letting go, releasing self-blame and allowing love to win. I hope to remember these lessons throughout the next 13 years of her education, because as my sweet angel told me I can feel anyway I want.    

With Love,

Lilly