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Why It's OK to 'Drop My Sword' and Cry as a Parent

My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible.

I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order:

  • Emergency medical technician (seizures don’t always end)
  • Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.)
  • CPR administrator
  • Doctor
  • Nurse
  • Physical therapist
  • Dietician
  • Medical detective
  • Safety patrol officer (I should record “wear your seizure helmet” and just hit play.)
  • Lawyer and estate planner
  • End-of-life planner
  • Advocate
  • Oh yeah, and Mom.

Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl.

Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow.

Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future.

For the record though, I admit that I do cry.

Some days, I just need to drop my sword and cry for just a while. I allow it. I need it.

During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS.

I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow.

I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying.

Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me.

And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change.

Keep fighting my fellow warriors.

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