I am running late again and as I finally arrive at church for my son’s Mother’s Day mass there are no seats left. So I stand quietly in the back corner and listen to the priest talk to the students about the importance of mums, our amazing ability to multi-task and the sacrifices that we make for our kids. The priest encourages the children to make sure that their mums are pampered on Mother’s Day and that mums take it easy. Following the service all the mums are invited back for an enjoyable “kid-free” morning tea so we can relax.
We are all sipping on our teas and coffees in the school hall and as I walk around I hear conversations about exciting plans for the weekend. My son is new to the school and I find another mum from his class and introduce myself. I particularly wanted to chat with this mum because we share a common bond even before I’ve even uttered one word.
Just like me she has a child who lives with epilepsy. An instant connection is made. I try to hold back my excitement as I explain that this is the first time my son has been at a school where there is another child living with epilepsy. This is his third and smallest school he has attended in his short life. So the odds of another kid, let alone in the same class, were slim.
We talk briefly about Purple Day, epilepsy camp, how great it is our kids are in the same class at school and that they will share a special unspoken bond in their classroom that no other kids will understand.
Epilepsy is so lonely for a child. I remember my son never wanting to tell anyone about his epilepsy. It made him different. Being different isn’t cool for kids. I have seen the distress on kids’ faces when paramedics have worked on my son having a seizure at the back of a classroom. None of this is fair.
Epilepsy can be very isolating. I hope it’s unintentional and I don’t think it’s necessarily the kids, but generally parents don’t want their kids to have playdates with E-kids. The unknown fear factor – What happens if he has a seizure? Is he “normal”? My child might catch it! It might upset my child seeing him having a fit!
So I am standing here with my cup of coffee talking to another mum who gets it. She, just like me, is a mum who was at some point thrown into the cold, dark, shitty epilepsy pit of despair. The complete hopelessness a parent feels as their child has a seizure – only another E-parent really gets it.
After each seizure we are there to pick up the pieces and tell our kids that it will all be okay. As a mum, it’s our special hugs and love that help our kids cope. It’s the mums that spend countless amounts of time googling the internet looking for answers. We attend the medical appointments, pick up the medications, we encourage our kids during their therapy sessions and try to keep the family unit from breaking apart. As a mum it’s also our job to make sure our non-E kids are not forgotten and try to justify to them something that’s not fair on them or their brother.
It’s not an easy job, but we are doing the best we can. I guess that’s all any of us can do.
So Happy Mother’s Day to all the amazing mums out there, wherever you may be on this unwanted epilepsy journey remember you are not alone and you are doing a great job.
Ragdoll Mumma Kelly xo
PS It’s Mother’s Day in Australia today, but even if you celebrate this special day at another time of the year I still hope today is extra special for you.