I am fine.

I take a deep breath and pause for a moment. Holy crap I think I am about to start crying and assume the foetal position in the dairy aisle of the supermarket. Okay more deep breaths, I’ve got this and I am going to be okay. Oh crap, nope that’s not working. I still want to have a good cry. Perhaps I can leave the groceries and run to the public toilets and lock myself in a smelly cubicle, cry me a river and then flush it all away? No, no, no! I can’t just walk out, come on Kelly pull yourself together!

So that’s what I did. I finished my shopping, smiled at the lady who kindly rushed my overloaded shopping trolley through the express 12 items or less counter and went on my way. I wondered later whether I was actually unknowingly rocking and the check-out lady recognised I was teetering on the edge of collapse. “Code three in dairy aisle. Repeat, code three in dairy.” Maybe this is actually “code” for another mumma is about to lose it and get her out of the store as quickly as humanly possible?

If you haven’t guessed, things have been tough. Our little man has been having seizures and we’ve bumped up his medication. Things are starting to settle again thanks to the med increase, but this week we had an appointment with his neurologist. I showed him a couple of videos of our son’s seizures. The neurologist was writing a lot of notes about what he was seeing.

The first seizure I showed the neuro lasted about 45 seconds.  After the seizure jerks had stopped it took me about ten minutes to rouse my little man.

The second seizure lasted 27 minutes. We have a video monitor, but no seizure mat and so unless I am watching him, I have no way to know whether he’s having a seizure.  Our son has ragdoll seizures, where for the bulk of the time his whole body is floppy and he’s unresponsive. No seizure mat will pick up a ragdoll seizure. So it was only the next day when I woke up, checked him and realised he’d wet the bed and he was still tired and sleepy that something was wrong. I checked the monitor recordings and discover he had had a 27 minute seizure – I feel guilty, but there’s nothing I can do. Our son is supposed to be given an emergency medication three minutes after a seizure begins, that night I slept instead.

The neurologist looked at the video and asked whether I had given my son his emergency rescue medication.  I tell him I didn’t and he tells me I should have. I know that and feel completely gutted, but what am I supposed to do – never sleep? We leave the appointment with a prescription for more medication including emergency rescue meds. I feel like crap.

For the past few nights, I haven’t slept well. I lay in my bed watching my son through the video monitor. Exhaustion finally wins out and I fall asleep for a few hours and then wake again to watch and check he’s okay.  I am so tired.

So back at the supermarket, my phone rings and I answer the call. It’s a tradesman who has been working on our home. I apologise I hadn’t been able to speak with him earlier in the week as we were at the hospital for an appointment with our son’s neurologist.

“Oh God, is everything okay?” the tradie sincerely asks. I explain our son has epilepsy and he has been having seizures and we are trying to sort out his medication.

“That’s terrible, I am so sorry. I hope he’s better soon,” the tradie says awkwardly, not knowing what to really say.

I tell him it is fine and hopefully my son will grow out of it.  That’s when it really hits me. None of this is fine and we are not okay. I am not okay. This is just shit! I get through the phone call and want to curl up in a ball, but I don’t. Instead I carry on.  That’s what we do.

Fortunately I like to talk a lot, so I have a network of great listeners who just listen when I need to talk. I know other mummas who swear by meditation, popping health shop calming remedies and listening to calming music. That’s not my thing. I once tried popping a quarter of a sleeping tablet prescribed by my family doctor – that didn’t work at all and ended up with hilarious consequences. Instead, I talk and talk to those in my trusted circle and spend quality time crying and singing in the shower!  Nothing will change the cards we’ve been dealt, I guess we just need to make the best of a crappy situation.

If you are at tipping point, you are not alone and there is no right or wrong way to get through this. If you need to let someone know you’re not coping, please reach out. The last thing we need is another disaster in the dairy aisle.

Take care,

Ragdoll Mumma Kelly x

Ps. I am fine!

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5 thoughts on “I am fine.

  1. Our son is a ragdoll too. We recently increased one med and decreased another. He has gone from running rings around us to being tired and floppy all of the time. We get him to school maybe two to three days a week. This week one day. Tonight he was asleep before dinner was ready
    I hear you, i feel you. I want to hide and cry so my husband and older children cant see the doubt in my tears. Is this all there is, will there never be an end.

    Like

  2. Sorry to hear about your son. Could you possibly look into a service dog to alert you when he is having seizures? You cannot be expected to remain awake all the time to watch. Sleep deprivation isn’t healthy and you have to rest in order to take care of your child. Dogs are amazing. It could change your life.

    Like

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