One year ago tonight, my tiny daughter - one year and one day old - had a mini stroke.
It happened in an instant. I still think back to the small details of that night to see how long we didn’t notice her arm, but the truth is that it really is that sudden. I have a photo of her on my phone (so it’s time stamped) from two hours earlier in the night where she was using both hands, she was laughing and being silly pulling a (clean) nappy over her head like a bonnet. Two hours later she was wildly unsettled, we were passing her back and forth in an attempt to calm her when she vomited all over herself and me. I took her to her room to change her clothes, when I picked up her right arm to put it through the sleeve of her pyjamas, I felt it. Nothing. Absolutely and completely limp. No tone. Trying to stifle a rush of panicked tears I called out to Chris that we needed to call an ambulance. He took her while I calmly and quickly told the operator what had happened. The ambulance was here within minutes - lights & sirens like the operator told us there would be.
She laid against me for most of the ambulance ride, the paramedic calmly asking me question after question while telling her colleague to speed up. I could see a mash of blue & red lights outside against the window. I could see my daughter’s goofy lopsided grin in the reflection - a now telltale sign that she was having an absent seizure. I was told we would shortly stop alongside the road to meet a specialist paediatric paramedic team to accompany us to hospital. It was raining outside when we stopped, we were beside a railway line and just like a scene from a movie the ambulance doors slid open to rain pouring down on the railway tracks that were lit by one lonely spotlight. And right on queue a train blared it’s horn and rushed passed us as the specialist team boarded. I could hear traffic rushing past us. The paramedics administered her rescue medication, they asked a few more questions as we continued to hospital. As we entered the emergency department of the hospital via the ambulance bay, I heard a man’s voice boom “they’re here - look alive!” It was only when we turned the corner that I realised he was referring to us and he had been addressing close to twenty people. They did not muck around checking her over, inserting a cannula, though as has always been our experience, they were sweet and kind to me and incredibly gentle with her. And in that small room full of people they deliberately made space for me right beside her head. They sat me down and wrapped me in a warmed blanket.
They are angels.
The CT scan showed no sign of stroke (hence her doctors refer to it as a ‘mini stroke’, all the signs and either none or minuscule damage to the brain) so they called in the on call neurologist from his sleep in his home in the pouring rain to come into the hospital to continue to assess her and make a plan for the next day. We made it up to a private room (thankfully) on the ward in the still-dark at 4am. Amidst all of the cords and leads she was hooked up to, I laid with her in my arms in my bed and there we slept for two short, but restorative, hours.
When her neurologist came to see us that morning he was almost apologetic, that he hadn’t been able to predict or prevent this. As he left our room he stopped and said to me “please know she is safe here, she is so safe” and for the first time, I cried.
She had an MRI that morning, they were all so gentle with her, deliberately careful with her arm, but when they wheeled her into the room I was left alone to head back up to our room. When Scarlett got back to the room, as she was being hooked up to an EEG she had a seizure, so a MET (Medical Emergency Team) call was activated. Inside three minutes our room was full of at least 25 medical professionals, spilling out into the hallway. My initial thought was ‘calm down guys, it’s ‘just’ a focal seizure’, but it was scary as hell at the same time. A social worker made a bee line for us, introduced herself, advised that she was our advocate through this and we can gain clarification or ask questions through her. Each time a decision was made, she ensured we understood before the team progressed. Scary as it was, it was also bloody impressive! Penelope slept soundly in her father’s arms through the entire MET call.
Scarlett and I stayed in that room for 15 days. We knew the names of all the regular nurses, they were amazing - some would make me tea if they found me awake with her at 4am. We spent Easter in hospital, the nurses played Easter Bunny and left her a chocolate egg in the night, we were both showered with treats all day. I learned quickly how to advocate for her, to ask for what we needed and how long, lonely and powerless the nights feel. She had EEGs attached to her head for days at a time, I would stand at the computer monitor at the foot of her bed that showed her brain waves in real time, trying to decipher them although I obviously knew nothing to look out for. I learned once again how to protect our space and make room for my immediate family (my husband and children only) and asked everyone else to respect our request not to visit. So they sent goodie bags and flowers and magazines and cooked meals for my family at home instead. They indulged my emotional text conversations. Our village is so strong and loyal.
One year ago today my tiny daughter had a mini stroke. It took 4 days before I saw her smile at me again. It was weeks before her arm regained any sort of significant movement. Yesterday she turned two. She uses her hands and arms almost equally, she is the cheekiest little love in the world, she is walking 100 percent of the time, her development is at the very low end of typical, but she is thriving! She is our precious unicorn and she teaches us every day about just getting on with this beautiful life.