It crept up on me.
Like a sniper in the digital night, I drifted, unknowing.
Scrolling back through my camera roll, years, searching for an image that was strong and true, yet safe enough to share with the world.
I looked for a picture that said, “Look where we were,” so that I could better celebrate, recognize, where we are now.
You see, every once and a while, I can’t feel it. I don't get it.
The gratitude becomes normalized and I am not enveloped daily by the beauty of the growth.
I can't appreciate the victory of going from 10 seizures a day to none.
I find my pragmatic self-reminding my optimistic/ romantic self that Luke, my 4-year-old, is still non-verbal. The developmental delay makes social events and even errands impossible at times. But when I start feeling sorry for myself and my inner voice sounds more nasally than normal, it is good to remember where we were.
When the chip on my shoulder starts to give me back pains, I know I need a jolt.
So, I keep looking. A video of him trying to walk when he used to fall constantly?
Or when he used to try to feed himself but his arms were contracted and he couldn’t use his hands?
Or when the only place we could play and I could relax was when he was wedged in the cheese pit at the gym?
I scroll through an old album, click on a familiar thumbnail and as soon as the video starts to load (my phone is a 5S and is no longer enjoying its role of running my work and personal life all while being chewed on) I start to panic. I know what it is, but I can’t get it off. My phone is now, more determined than ever before, to play this video and is ignoring my aggressive attempts to go back to the main menu.
The image is frozen but I see his long arms stiff and straight. The first frame of the video lingers on, loading. I see his eyes rolling back and to the right and his head in my lap. My breathing stops. The video starts.
Whffff, Whfff, Wffff.
Whffff, Whfff, Wffff.
Whffff, Whfff, Wffff.
Luke seizing. Stiff. Distant.
Luke seizing. Gone but trying to break though.
Luke seizing. Seizing. Seizing.
And 3 seconds of a moment that was so normal to daily life that I never considered the emotions it could evoke.
3 seconds brought a wave of fear and sadness and terror that I thought had been properly grieved and processed and mourned.
3 seconds of an event that happened 10 times a day every day for years, if not more.
3 seconds of a video from two years ago and the tears came for every evil seizure that crept up on us and tried to drag my baby off into the darkness of night. We played a tug-of-war for his life for four years. Doctors, family, friends, therapists on one side and the benign tuber that was causing refractory epilepsy on the other side of the rope.
The tears came for the boy Luke was trying to be.
Free. Independent. Curious. All relentlessly interrupted by the chaos of the storm inside his head.
The tears came for the mom I was trying to be.
Brave. Faithful. Strong.
As I cried, I felt relieved and almost excited to finally be having a breakdown (me= psycho). I thought this meant that some of the pain had caught up with me and I was finally able to pack it away once and for all. I mean, I thought I had properly stored it away for the offseason. Yet it came tumbling out of the closet like a bin of old blankets crammed away for summer.
So, like any unforeseen mess that life brings, I took a breath and asked the mess why it was here. Like running into an ex at a bar, I fumbled over myself trying to put a coherent idea together. I rambled in my mind about why I needed this ‘emotional breakthrough’ and why it was good and how healthy and healed and whole I would be once I was done crying and it was over.
I took a breath and laid down on my pillow and the pain that I had packed away, draped over, covered me, and tucked me in as I cried myself to sleep.
Pain is not something that you can surpass. You can shelve it. You can put it away and pack it up neatly, but, while sitting on the shelf, it does not disappear.
It waits for you. It waits until you are ready. Ready to pull out the cardboard box from the basement of your heart and try to figure out what it even is anymore. The longer it sits, the harder it is to make out what it even was to begin with.
But pain, I have found, is like the monster under your bed. You create the grandiose ideas of its powers and strength. The longer you lay in the idea of the pain, the more horns and teeth and snot it has. Until you muster up the courage and peek under the bed and realize it is the sock you have been looking for and a sippy cup of old milk, do you realize that you should have just looked under the bed hours ago.
As I dug through the layers of sediment for my fossilized emotions I excavated something else that had enveloped the pain. The emotion that seems to coexist with pain and fear, but when it is unpacked and cleaned up, refurbished, it is left to stand alone.
The real reason I was in the fetal position that night.
The real reason I was a puddle of vulnerability.
The real reason that I was going to be ok.
What I had unpacked was Love.
It was love that had me wanting to throw up.
Normal for you to love something so much it hurts. It brings you to tears. It compels you to use hashtags such as #soinlove or #loveyoutothemoonandback.
Normal to you, maybe.
But not me. It was dangerous to love Luke with all my heart and all my soul. It was hard because I was always almost about to lose him. I couldn’t love him with this full whole love because what happens when the seizures would snatch him from a puzzle or a bath or a nap? I couldn't gaze deep into his eyes because he was rarely behind them and when he was there and you got attention you knew he could be ripped away at any second.
The video reminded me that I had forgotten it was dangerous to gaze and love and adore.
Seeing his eyes roll in his head and hearing the chill in my voice... I sounded so brave.
But I couldn't feel courage because I couldn't feel anything.
I had felt nothing just in case fear or loss or despair tried to creep in the side door. That clip made me feel as though my heart was removed from my chest and placed on a peg in a Whack-a-Mole game, ready to be demolished in one heavy swing.
The year and a half away from the seizures had given me the luxury of forgetting. And what did my romantic, rash, ridiculous self do?
I went and fell in love.
So why was this love so painful? Why did this love hurt? Wasn't I supposed to be happy, not aching?
So, I sat with that raw mess of a feeling for a few days.
Much like a fitted sheet for a bed, I knew there was a way that others were able to neatly store their stockpiles, it had even watched tutorials on the process. So easy! They mock back at me. There was no Pinterest Hack for this one.
I tried so hard to shove it away, but the exposure to light and air had made the truth swell and grow and it no longer fit back in the sturdy, compact box it had emerged from in the dark.
And then, during the exquisite reunion of Real Housewives of Beverly Hills, while I was clearly and successfully in the process of numbing and escaping from all of this exhausting growth and self-discovery when Pain came barging in like the Kool-Aid man demanding to be heard, completely interrupting my Nachos and Chill time.
The can had been kicked to the end of the metaphorical road and the time was upon us. This visitor was here, again, to remind me it was time to feel and think and emote and process.
These are things I typically try not to do past 10p.m... for health reasons.
Pain just stood there, quiet and awkward and made me look at it. Stare at it. See it for what is was then and what it was now. Then, Pain raised its eyes to mine and lifted the black hood away from his face and off his head.
And revealed who he really was.
There stood Love.
Pain, that I had tried to pack away was just Love that I had sent out into the world looking for a home and was met with a No Vacancy sign.
It was chronic illness.
It was divorce.
It was loss.
It was Love that was given, sent out, but never took root. It was the Orphans of Love that had to transform and adapt to survive in this scary place far from Neverland.
It was Love that didn't feel safe and protected so it had to bulk up and try to be tough.
It was Love that stood there trying to fool me with a mean mug and a wifebeater (I honestly have no idea another name for this particular undergarment).
But, come on. I teach 3rd grade, for goodness' sake.
You can’t get me with that move.
You can cock your head to the side and cross your arms and shrug and grunt, but I've got your number.
When you finally let Pain come out of the front lawn and into your heart, when you get the Pain to come out from under the desk and walk with you down the hallway, holding his hand, when Pain decides to come out of the alley and into the light, you see that it is just Love that was scared and alone, left to fend for himself.
It was Love that was afraid it would be told ‘no’ or rejected or ignored or lost and so it morphed into Pain and tried to hurt you first and beat you to the punch.
It was Love with no one to tell him to turn off the tv or eat his vegetables or use his manners.
It was Love with no one to read him a story or pray with him at night or put a Band-Aid on an invisible boo-boo.
It was Love that was packed away to be dealt with later, clearly with no place to fit for now.
But I see you.
I’ve seen enough 9-year-old boys on the playground “being mean” to girls to see through this charade.
Pain, you are just Love trying to not to be seen, not be caught in the act.
Your longing to belong and invited is now absurdly and offensively apparent.
Quit chasing me and making fun of my training bra.
Quit whispering and giggling.
Quit trying to pull my hair, I know you love me.
What do we tell the girls on the playground when the boys won't stop "picking on them?”
You want the game to end?
Running feels beneficial because it is forward momentum.
You are moving, you are doing.
But those years of running might as well have been on a hamster wheel. It's like the video of the person who falls in the pond and they are screaming and flailing and getting themselves into a tizzy and then someone says, “Dude, stand up.” And they realize they are in 3 feet of water.
Dude, Steph. Stand up.
Chill. It’s not a nervous breakdown.
It’s called Love, ya lunatic.
If you have talked to me in the past few months chances are i said, "podcast" so much that it made you never want to listen to a podcast ever. I may have even uploaded some in your podcast library. Go look. You may not have been watching.
However, if my aggressive love turned you off from podcasts for your entire life, please make a tiny exception. No, not for Brené Brown on Oprah's Super Soul conversations, while I will still argue that this (along with Elizabeth Gilbert and Glennon Doyle) is life changing,
The podcast is continuing education for our deeper understanding of Tuberous Sclerosis and epilepsy with candid and honest interviews from the doctors that saved Luke's life. I am hopeful that others may hear Luke's story and find the courage to fight for their child's life even when those around you may disagree with your decisions or dismiss your hustle.
Keep on soldiers. Do you, Boo.
Click HERE to link to Texas Children's website and listen to podcast OR go to podcast though iTunes here.
If you search in podcast just type in Outcomes Texas Children's and you should be linked right to it as well.
I'd like to leave you with an oldie but a goodie. If you want to feel your wisdom quantitatively, this song is 18 years old.
To quote The Hova-Man, Jay-Z for your young guns out there:
I'm a hustler baby. I just want you to know.
It ain't where I've been. But where I'm 'bout to go.
Mother of two amazing little boys, one who just happens to be a TS warrior.