When I write, I often defer to writing about my own baggage through a lens of positivity. Things are hard, but I am lucky. Life is tough, but I have so many advantages. Challenges are real, but others have it worse.
This is not that. Rather than letting my optimism get the best of me, I’ve been inspired by others to be more real. Use writing to express my actual feelings, rather than the ones I’m aspiring for.
The optimist instinct in me says – with all that is happening who am I to be sorry for myself? Didn’t I just write about too much self care? It’s not like I’m a refugee from Kyiv or Palestine or the a parent of a trans kid in Texas. I’m a healthy, rich, white male with an amazing support system in my life.
But the realist deserves a second here.
My daughter has Epilepsy. Which basically means her nervous system short circuits every couple of months. She has a seizure. She loses all motor and mental function. Sometimes it is violent, sometimes almost imperceptible. They look scarier and more dangerous to her than they tell me it is. But it’s not their kid, so what the fuck do they know about scary.
This last weekend she had a big one. Not the typical, restart the machine, and things will even out type seizure. Rather, a prolonged series of seizures that didn’t respond to her rescue medicine. Meaning after a couple of hours of waffling about the course of action that were jaded by horror stories of 5 hour waits at the ER, we drove her to the ER still actively seizing.
On arrival, she was rushed into triage immediately. Which naively felt amazing for a minute.
But once see your child surrounded by ten hurried, stressed, worried professionals — the microdose of “glad we got in quick” faded, and I got scared. Oxygen mask on, IVs inserted, the intense noises of cross talking docs, Nurses, and Neuro specialists combined with the vitals monitoring nearly broke me.
If they are nervous, does that mean this is different than the other times? Did we wait too long? Should I have told the optimist to move along earlier and rush her to the ED an hour ago?
Lida Rose Callanan is 4.75 years old and special as fuck. She’ll tell you as much if you ask. Well, she doesn’t swear yet.
She loves the purple, but also pink, and also blue and would prefer if you didn’t make her pick just one favorite. She loves to learn new things about animals, science and nature. But in reality, she’d be cool if you just put Encanto on again man. She is a kick-ass big sister already. Even if that occasionally means kicking her little brother’s ass inadvertently.
She is strong. She gets blood drawn without tears. Sits attached to a bed by wires to her scalp without complaining except to say these electrodes are itchy. She’ll eat a kale salad, oysters and sushi. But would be cool if you just give her mac and cheese and chicken fingers man.
She’ll tell the nurse who is about to poke her again that her biggest complaint is that new toys haven’t been dropped off yet. She’ll correct the resident when he calls her Lydia. “My name is Liiiida. Some people call me Liiiiiida Rose.”
She is the best part of both of her parents.
But me, I am tired.
I’m a fixer. I like to solve problems. Mine, or others. I’ve believed that if we just do the exact right series of medication, sleep and nutrition — She won’t have another seizure.
But Lida is special. She has a malformation in her genetics that means she’s epileptic. Today, and probably forever. No matter what level of helicopter parenting I do.
Lack of control is hard. I’ve never done well with it. I genuinely believe I can control almost all elements of life. In some cases, it has served me well. Helped me get into college after getting a rejection letter, start a business after my job evaporated, score a hot doctor wife who’s outside my league.
But I’m learning that that obliviousness to reality comes at a cost. I can’t internet research my kid’s pain away. I can’t run enough miles to feel ok with her not being ok as the norm.
It is not a problem I can solve. It is a reality I have to live with. My child. My first born, moody and snarky BFF, has epilepsy.
And today, that feels scary. Really fucking scary.
Fingers crossed. Lida will come home tomorrow. They’ll take the electrodes off her head, and they’ll modify her medication slightly. She’ll be back at school playing teacher’s pet, and bashing her brother off a couch by the end of week.
But she’ll still have epilepsy. She’ll have another seizure. We’ll have a plan for what to do. That plan might even work.
But I’ll be here, spending a large percentage of my mental energy thinking that it might not.
So if I seem too into a random conversation about the virtues of some piece of gear. Or I ramble a bit long much who makes the best burger in a random city – it’s because I need a focal point that is not, that.
Conversely, if I seem distracted or disengaged it is probably because I am. I want to be present about our work project. Or your kid’s progress in travel soccer. Or your trip to Tulum. I want to care about all the little things.
But I can’t right now.
I’ve got bigger little things to worry about.
Hugs and Kisses Everyone.
– Lida’s Ukulele Guy.
Thinking of you 4. Sending lots of love to Lida and her mom and dad. Great writing for a very scary time.
Raw and powerful, scared and beautiful. I love you Neil.
What a testimony…WOW! My heart hurts right now after reading this I can only pray for you all…and am convinced with all my heart she will live a long and happy life with the conviction of her amazing parents
Beautiful and heartbreaking. Lida is so lucky to have you two ❤️
Thank you for sharing ❤️❤️ Hoping you and your family have an easier road ahead
thank you for sharing and pouring your heart out …… I am so sorry for the excruciating worry you and Laura are going through and that Lida has to endure all of this. It is beyond tough. No platitudes to offer… but hoping and praying that Lida’s condition will be effectively managed and your worry eases.
So poignant, Neil. We love you guys. Sending the biggest Hector hug ever.