What It Really Means When I Say 'Because You Never Know'

“Because you never know.”

We have rescue meds at school and in the diaper bag, but I asked the pharmacist for another refill and stopped myself when I felt obligated to explain why.

“Because you never know.”

I left it at that. He understood.

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• Is Epilepsy an Autoimmune Disease
• Can Epilepsy Kill You

A friend of mine recently went away for a girl’s weekend and forgot her phone.  Her first response, like most people’s, was unease, but she quickly grew to love being disconnected and free. That would terrify me. My anxiety goes up when I realize I’m without my phone while I do a simple load of laundry. What if I miss the call? “The call” is seeing that dreaded number show up on your caller ID, your heart dropping and you answering with fear in your voice. Before the person on the other end even says anything, you’re already planning the quickest route to your child. What a relief it is when it’s just a therapist calling to discuss new ideas.

“Because you never know” means canceling your plans for the day because you feel something is off and you need to be able to get to your child in a heartbeat if you get the call. It means always being on call, never having a moment of true relaxation because in the back of your mind, you know you could get the call.

Nothing is simple. Nothing.

“Because you never know” means determining if attending a friend’s dinner or playdate is even worth the planning, stress and possible seizures. It means there’s no “get up and go” for our family. A simple outing is not simple.

“Because you never know” means we determine which opportunities for life experiences are worth the risk. Sometimes we push it pretty far because we want her to enjoy every second of this life she has. Because you never know…

It’s the unrelenting fear, every night, of what the next morning might bring. It’s the relief when you hear happy sounds coming from her room. It’s the fear of each cough or cold germ that could cause a downward spiral of seizures.

It’s the guilt you feel when you simply don’t have the strength or energy to host a playdate or clean the dishes from dinner two nights ago. It’s staying calm even when you’re terrified, stressed and exhausted.

Breath, Maya. Just breath.

It’s when she stops breathing during a seizure. It’s fearing that this is the one – the one that could take her from you. You feel her slipping away. It’s looking in her eyes, terrified you’ll lose her. It’s that ache in the center of your chest and the gut-wrenching terror.

Just breath. Just take a breath, Maya.

“Because you never know” means searching the world over for treatment options – some have been more successful than others. It means maintaining hope but feeling in your gut the possibility that there is no cure.

It means friends who understand and support your family’s choice of treatments and who play a tremendous role in your ability to obtain these treatments.

It’s having an army of friends who understand your last-minute cancellations, who clean your house for you while you take an unexpected ambulance ride, who care for your other children when all of your focus is on your seizing child, who don’t know what to say at all but are there for you.

It means hearing your children’s friends use the word “seizure” naturally and easily in a sentence. It’s feeling like the luckiest family in the world, appreciating the village that contributes to your family’s happiness and well-being.

It means knowing a love like no other.

It means making the most out of the good moments, the good days, because you never know.