What Waiting Looks Like
Garreth got kicked and pinned in the ribs yesterday. I got smacked in the face, a fairly regular occurance. Liam took it in the leg and Aidan’s finger was bitten until it bled.
Family snuggle time in this house has its recreational hazards when seizures are involved.
Aidan’s seizures are changing again. He drops his head now frequently when he drives, taking away his greatest skill. He tremors and stares quite a bit making meal time another long arduous task.
And after his tough tonic seizures like the one that happened at snuggle time, his face turns red, his breathing is jagged and then he cries as he comes to.
And now we’re playing the waiting game.
Aidan finally received his certification to legally use cannabis to treat his seizures. We’re very excited and hopeful and ready and maybe a little desperate.
But now we have to wait.
Wait for the right plant to grow.
Wait to soak it in vodka, the good stuff, to actually turn it into medicine.
Wait to have that tested and properly dosed.
But mostly we have to wait for Aidan’s spine surgery to be done. We’d be breaking federal law by crossing state lines with his medicine. I’m not actually claiming any sort of moral high ground in the waiting because it’s a pretty dastardly deed to just stand by and watch my son make himself bleed.
This waiting feels like wasted time, where my kisses are powerless and my words, I’m promise I’m fighting this with you, meaningless.
But we will wait, together, and hope and snuggle more, because that’s what we do.