Grief, we typically equate it to the loss of a person. Grief that is the loss of what was or should be is like a wave you see coming but can’t avoid. It knocks you down with one fell swoop, dragging you out to sea, you are left fighting your way back to shore, yet finding nothing looks quite as you thought it did once get there. I know that grief all too well, it’s the wave that is called your child’s diagnosis.
We, parents of children who live with disabilities or medical complexities, are often sent out to sea in one quick fell swoop, our head’s bobbing, gasping for air. We find the will to swim, often alone, until the rescue boat that is other medically complex parents pulls you aboard, landing on an opposite shore.
You see grief in medically complex parenting comes in waves, you learn to brace for impact, there are times you are pulled out to sea and there are times your feet dig so far in the sand that nothing can bring you down. But it’s the waves of childhood milestones that hit the hardest.
Middle School. I knew it would hit hard, nonetheless I wasn’t quite prepared. It’s THAT wave, the one that came in gently but it knocked me down, I was sent out to sea once again. This time head bobbing, smiling though screaming, too far out for anyone to hear the cries for help. As I’ve listened to other parents whose children have also entered new stages I’m reminded of the nevers, the most likely nots and the harsh reality of epilepsy.
You are battling your way through the nuances of adolescent parenting. I’m grieving not getting to experience those normalcies.
You are worried that the ice cream shop moved making the walk there not as safe, I’m wishing that my kid could just walk there at all with friends.
You are letting go, allowing your kid to go out to lunch sans parents. I’m wishing I didn’t have to be there all the time, giving my kid freedom and independence.
You snuck away for a quick dinner out with your spouse, your kid is now at the age they can be alone for a few hours. My kid will NEVER get to be alone.
Friday night football games, middle school dances, clubs or organized activities sans Mom…the list of nevers and most likely nots goes on and on.
Every new phase of life I’m faced with a new different wave of grief. I’m reminded that my child who lives with a disability doesn’t get “normal”, therefore as a parent neither do I and sometimes I feel robbed. Robbed because I know “normal”, I lived it, but she likely never will. Robbed because “normal” parenting to me includes administering daily medications, tracking seizures, scheduling appointments with a lengthy list of doctors and specialists, making sure an IEP is being followed and trying to find camps and activities that don’t shy away the minute they hear the word epilepsy.
As the waves of grief roll in, I am reminded, I swam to shore before. The grief though, it’s not left out there, it comes back with you, it stays with you, it lives in you. You learn that normal is subjective and though others aren’t navigating the same treacherous waters as you are, they are navigating. Those parents on the boat that picked you up along the way, those are the ones who will hear your silent screams, they too know the same grief of what should have been and what never will be.
*Disclaimer – Grief, is incredibly personal. I do not know the grief that comes with a loss of a child that so many in my epilepsy community do. I do however admire and keep them in my heart.
Secondly, this is not to say adolescent parenting isn’t HARD, I am watching those around me battle through. Often when I share these types of posts they are met with “the grass is always greener”, I can assure you the grass on this side isn’t the place you would rather be.*
Rea of Hope 