I watch Haley. Alert and anticipating. Ready to spring into action at any moment. That intensity isn’t lessened by the fact that she went 10 hours seizure free. That tension wouldn’t be lessened if she went 10 months seizure free. That expectation, that worry, that awareness that a seizure could strike any second, is prevalent in my mind. Always. At any given moment.
When I make a grocery list. When I weigh whether it’s safe enough to drive 10 minutes to the larger grocery store or whether I should stay in town. When I work. When I visit a friend. Even in the rare moments that I take time for me. It’s always there. Niggling, nagging, present.
It is the elephant in the room. Those seizures that might occur at any given second. The seizures that are unpredictable and relentless. Those seizures that steal pieces of my baby girl one minute at a time. Even when she’s not seizing epilepsy is stealing her life from us. The caution, the worry, the fear. The seizures that don’t happen but could.
The side effects of the 17 medications that she has tried in various combinations have taken their toll. The side effects we were never fully informed of or that were brushed off as rare or necessary risk. The question of whether the pharmaceuticals have done more damage than the seizures is the elephant in the room. Unanswerable. But the question hangs there, persistent in my mind.
The words cannabis, marijuana, pot, weed. Whatever you call it. I call it medicine. I call it hope. I call it our last chance. But every conversation where we skirt around it, where we call it cbd, where we don’t speak openly about the government patent on its neuro-protective properties, where we don’t admit that we are victims of decades of manipulation and lies, where we don’t acknowledge that it’s just a plant makes it another elephant in the room.
SUDEP…and the 50,000 seizure related deaths that occur in the US every year. The fear the grips my heart any morning I awake before my daughter. The anger and fear that coils in my stomach and throat, that wraps around my lungs and makes me unable to breathe through those moments. The acknowledgement that my child is at high risk of becoming a statistic is an elephant in the room.
The moments we lost, the memories we didn’t get to make, the hovering question of who would Haley be if she had access to cannabis from the beginning. Who will she become if she could get access to it now? I hope we get the chance to find out. I hope we leave behind the elephant in every room and learn to live. Cannabis gives us hope that someday we might…