There have been many friendly conversations arguments with my fellow Ragdoll Mumma about what’s normal in life. We regularly chat and one of the first things we ask is how our kids are coping and then how we have managed to juggle life since our last long distance phone call.
The conversations we share are deeply personal and the subjects we discuss undoubtedly would disturb “outsiders” and non-special-needs parents, who we affectionately refer to as PNs (‘Perfectly Normal’ people).
We talk about our kids’ therapies, appointments, medications that are working (or not) for them, school and any new neuro titbits we may have come across.
We share our kids’ successes, near triumphs and their tough days. And at the end of our conversations we try to convince each other that our kids are PN and we are PN too.
For the bulk of our life, I would like to claim that we function just as any other PN family, but I reluctantly admit that sometimes we can’t claim the PN title. One recent outing to our local shopping centre reminded me like a slap on the face that things aren’t always PN.
The shops were busy and none of us wanted to be there, but I needed to buy some groceries plus a few other bits and bobs. For my son it’s a challenge to cope with the fluorescent lights, the overload of noise, the crowds, the unfamiliar smells from shops and people, and the unfamiliarity of his surrounds. This is not part of his routine. It all becomes too much very quickly for him.
He complains he needs to go home, but I persist and tell him we need to keep going. He says his legs hurt and he’s starting to stamp his feet. He’s started to play ‘piano’ with his hands on his legs. The longer I spend shopping the faster his fingers move. He is now walking at a snail’s pace. He’s not coping at all. I place him in my shopping trolley. He’s now tapping his mouth with his fingers and he’s positioned awkwardly between a large bag of beanbag beans and a loaf of bread he’s squashing. He’s covered his head with a bag of clothes that I’ve just bought for the kids. He’s not making a scene, not being naughty or being noisy. He appears almost semiconscious. He is just trying to retreat from the world that he sometimes finds too much.
It breaks my heart.
He’s nine-years-old and although he’s tiny for his age, my fellow shoppers are staring and wondering why he’s in my trolley. I try not to make contact, but today I see a woman give me an awkward sympathy smile.
I keep on pushing the wonky and now heavy trolley with my two other sons starting to complain they’ve had enough too.
We soldier on and I finally admit defeat with half the shopping done we head for the comfort of home and to his familiar safe surrounds.
Once home, we all return to “normal”- the status quo that makes our lives seem PN.
I wonder often about his quirks. Does it stem from his epilepsy? Is this just part of his “unofficial” sensory processing disorder? Is it the medications that I make him take every day to stop the seizures? How many times did he stop breathing last night? Did his CPAP, a machine that reminds him to breathe, not work effectively? Is that just the way he is meant to be, regardless of the challenges in his life?
I really don’t know.
Is any of this perfectly normal? – well for us yes!
The tough days are tough. We get through them one day at a time. It can be exhausting. There is an upside to all of this and that’s when we have the good and the freaking awesome days. These days are never taken for granted by our family. The days when we think things about to turn to a big steaming pile of camel poo and they don’t!
A sigh of relief when we’ve practiced and prepped for a week so that we can all go to a concert and that he won’t freak out at the noise because he’s now got ear muffs, his iPad and extra chewing gum to chew.
It’s not even the big things that make us smile, even the relief when he falls over and he gets up and he’s not angry and calm enough to understand accidents can happen.
We are grateful for every day he is seizure free.
So I guess whether you have been “labelled” with epilepsy or any other tag, even PN, we should all take time to appreciate the normal times and celebrate and rejoice when things are good.
For the record I’m calling our family PN!
Please feel free to share your PN moments in the comments.
Take care, Ragdoll Mumma Kelly.