It was four years ago this week that Miss Z had her first seizure.
She was six months old and we had only just found out there was something “wrong”. But we had no idea what that meant or how “wrong” would manifest itself until that first seizure.
Looking back on that day, it is amazing to think how naive I was. The nanny came to my office door (I was working from home), carrying Miss Z and saying “something is wrong”. I held Miss Z and had no idea what was wrong – although clearly something was not right. She was breathing in a strange, rhythmic pattern, her eyes were fixed to one side, and she was twitching. It never occurred to me that it was a seizure. I’d never seen a seizure.
After watching Miss Z for a moment, I stated the glaringly obvious: she needed a doctor. The nanny asked if I thought we should take her to the GP or the hospital. After considering for a moment, I said “I think we should call an ambulance”. Then the nanny and I both paused. Neither of us had ever called an ambulance for anything before. It felt almost like we were doing something wrong by calling. After all, surely Miss Z wasn’t so unwell that she needed an ambulance? Weren’t they for car crashes and people keeling over from heart attacks? Making that call felt like an over-reaction.
Of course, making that call also saved Miss Z’s life, though we didn’t know it at the time.
(I now use that story as a parable to explain to anyone new to caring for Miss Z why they should never hesitate to call an ambulance if they think something is wrong.)
Once the ambulance arrived, we were blue-lighted to the hospital. I sat in front with the driver while two paramedics worked on Miss Z in the back. QB was waiting for us at Emergency. We were all ushered into the “resus room”. At one point there were nearly 20 doctors and nurses in the room. Miss Z stopped breathing twice and they decided to intubate her.
I left the room. QB didn’t – he told me later (much later) that he didn’t leave because he thought she was going to die.
But here’s the thing – it never occurred to me that she might die. I was scared and upset, but I never thought something tragic would happen to her. It wasn’t motherly intuition, I didn’t have some sort of deep maternal connection that told me things would be OK. It was naiveté. I just didn’t think something that awful could happen to me or my daughter. After all, she’d been perfectly fine yesterday…
After two days on a respirator in PICU, Miss Z was able to breathe on her own and we were moved to a regular ward for monitoring. On my birthday – four years ago today – we were finally given the all clear to go home.
The doctors suggested that the seizure may have simply been triggered by a fever and (although I had my doubts that she had actually had a fever) I agreed it must be the case. It never occurred to me that epilepsy might be one of the things that was “wrong” with Miss Z. It took several more seizures in the following weeks and months for me to realise that.
And I initially didn’t want her on anti-seizure medication – I didn’t want drugs messing with the balance in her brain. It took some time to accept that the drugs were correcting the balance in her brain, not messing with it. And that these drugs were going to keep her healthy… and alive.
Since her first seizure more or less coincided with my birthday (and a fairly landmark birthday at that), looking back I realise just how much things have changed and how much more I understand and accept now than I did those four years ago. It has been a long, difficult and stressful road since then – and we’ve never known what was around the corner. My vocabulary has evolved from “something wrong” to lengthy discussions on gastrostomy tubes, developmental regression, bisphosphonates and bronchiectasis. I’ve gone from staring blankly at my child, having no idea what to do, to someone who this morning calmly managed a 4 minute seizure in the middle of our nebuliser and chest physio routine.
I wish I could say the experiences of four years ago have made me a better, stronger person, but I don’t really believe that. I’ve simply become better informed and more experienced. I’m not as naive as I once was. But I am better equipped and able to manage whatever the next four years may bring.