“I’m/we’re fine”. “I’m/we’re all good”. The two phrases that quickly follow any question of “how are you?”
The truth is, we are not really fine, we are not really all that good in the true sense of the words. Living the rollercoaster of two children with uncontrolled epilepsy is never going to be fine or all good.
Watching both your children seize daily or for many minutes at a time and pleading/praying for them to wake up is never fine or all good.
Filling your child with hard core benzodiazepine drugs and then watching them have a paradoxical reaction and go crazy or psychotic for several hours is never fine or all good.
Knowing every ambulance officer at surrounding stations because they have been to your child repeatedly is never fine or all good.
Having both children seizing at the same time in different areas of the school and not knowing who to be with is never fine or all good.
Finding the silver lining and saying to your friend “the good part about going straight to resus is we get seen by the whole medical team immediately” is never fine or all good.
Having both your children sleep hours a day at school and miss many days and moments from seizures is never fine or all good.
Continuously cancelling play dates, catch ups with friends and the rare date night is never fine or all good.
At times, resenting your friends with ‘typical’ children who get to do ‘normal’ family things is never fine or all good.
Planning limited holidays around the closest hospital and ambulance service is never fine and all good.
Staying home almost every weekend because of seizures or they need to rest to get through school the next day is never fine or all good.
The truth is, in our way, we are fine and we are all good. We are our version of fine and our own version of all good. It’s an endless and relentless journey that is an episodic plot of stressful peaks and rare troughs of calm. Even in the calm, the anxiety kicks in waiting for the next round of unpredictable mayhem. We manage though as best we can. Our version of a normal existence matches our version of fine and all good. We may be curled up in the featal position sobbing on the inside, but on the outside there is no other choice but to be fine and all good and to keep on keeping on.
We love our children immensely and will fight for their needs like warrior parents. That’s why we will always be fine and all good – there is always something that needs thinking about and fighting for. We will never let epilepsy dictate their destiny. They too will always endeavour to be fine and all good, well their version of it anyway.
Imagine upon on asking the question ‘Are you ok?’, that you were given the full details on how things really are. How our lives are completely different and in a constant state of flux and chaos; the details of every seizure and med side effects; the sleepless nights; the lack of communication with our significant other because we have nothing else to give; the despair at yet another failed med; witnessing the psychosis your child is in due to medication and the exhaustion of having more conversations with medical professionals than your own friends. It would be overwhelming and would result in you not having a clue what to say and us in a state of meltdown. This is why we will always be fine and all good. The guard has to always be up.
When you hear an ‘I’m fine’ or ‘I’m all good’ from any parent of a medically fragile or special needs child, respond something like this. “You may say your are fine but I can see how tough things are for you. I am here to listen and to help. Please tell me how.” Then offer some suggestions, “I could make a meal, have a coffee and a chat, drop some shopping over.”
We know you will never comprehend how life is for us parents as this is impossible when you don’t live it. We do need to know we are not alone and just because we appear distance and wrapped in our own world, we still want to be included. Please don’t give up asking us to participate in things. Please don’t stop messaging to check in because you feel it’s a one way friendship. Please think about what it would be like to walk in ours and many other parents with chronically sick children shoes.
With friendship, compassion and kindness we WILL be fine and all good.
Ragdoll Mumma Angela