Seizure Mama and Rose; 1994
Join us as we journey from diaper to dorm room.
I wish I could claim that this is a “How to” manual for raising a child with epilepsy. It is not. This is the story of raising our daughter Rose. We made many mistakes. Our family did the best we could despite our own fears and ignorance. We were never trained as parents, much less as medical specialist. Our job was to raise Rose, not to cure her. We found the best doctors and tried many medications, but a treatment is not a cure. We did what parents do. We flew by the seat of our pants with our hearts wide open and breaking.
I do not recommend you follow this twisted trail of breadcrumbs that I have left here for you to read. I only hope that you recognize your own struggles among these stories and realize that you are not alone. Someone else has been where you are now, as terrified parent, and survived to tell the tale.
Just remember you do not get to be the superhero in your child’s story.
Yours is a supporting role.
Your child is the star.
When they fall down, you help them up.
Eventually, they will not need your help to get back up.
Getting back up is the important part.
Your job is to get them strong enough to rise on their own.
Then you can stand back with pride and watch them rise.
This is where we are now…
Watching Rose Rise