A date to remember: the day we divorced from epilepsy
By Kelly Wilton
The day of the divorce was a beautiful one in Brisbane; the sky was blue and cloudless, the sun was shining bright and the city had a slight buzz as it woke up to start its busy day.
As we walked to the hospital, we had a feeling of anticipation. The moment we had been waiting for, for so long, was finally here – it was the day we divorced ourselves from epilepsy and the day our son was to have his life changing surgery.
We donned ourselves in white gowns with our hair nets at the ready. The surgeon came in to tell us that he was about to change our boy’s life forever and assured us the greatest result would be the one he was working towards.
However, like everything in life, there were no guarantees.
As we waited for hours while our son underwent his brain surgery, we dared to imagine what outcome would await him. Would Mikey be walking within weeks? Talking? And would there be a slow but progressive road to recovery?
He woke up in the ICU – talking. He said ‘mum, dad, car’ – he was not happy to be in hospital and let us know about it. But we were so freaking happy, our little boy woke up TALKING!!
He hasn’t stopped talking since, with new words each and every day; the latest – over 12 months since surgery – being “no worries”.
He was also walking within a week of surgery; we just put some chips on the other side of the room to entice him and it worked!
The days were slow however as we came to realise that we all had to get used to living without the intense epilepsy we had known for so long. Just like any relationship breakdown, we had to adjust to this new way of life.
We haven’t had a completely smooth break-up either (does anyone?!), and epilepsy has resurfaced on the ‘good side of the brain’. However, it’s just there in the background, reminding us that it’s still a part of our life and to accept it, because the worst IS over. The damage from the condition has been done and IS over.
Now, we learn how to live with it. We take our son’s lead in his recovery which has seen him go from strength to strength, despite the epilepsy resurfacing.
And even though epilepsy is still part of our present – we did get a divorce on that day – the anxiety, the insanely high dose of medications, the intensity – are all a thing of the past. The epilepsy we have now seems to be manageable with meds. Like many relationships, whether we like it or not, it’s a part of his life, and ours.
Follow more of Kelly & Mikey Danger’s journey at www.lovingdanger.org. Their patient page for HHE Families can be found at: www.rareconnect.org/en
