Greenland

I’ve recently watched Greenland. I would recommend it. One thing really hit me though. The little boy talks about the flashes you see before you die.

‘Your life flashes in front of your eyes when you die. I think it would be better if it did that while you lived. That way, you could see all the good memories and be happy.’ – Nathan Garrity (Greenland)

I often wonder what Isla dreams about at night. What makes her start randomly laughing at 3 in the morning in her sleep. I love it, don’t even mind that waking me up (if I’m lucky enough to be asleep). But the movie made me think… what would flash before Isla’s eyes. It made me sad.

What made me even sadder is I’m sure she’s already had that sensation. I’ve seen her give me the look before she’s been shocked before where she knew she was going to die. It was a look of pure panic and horror what will always be with me. That look she gave me haunts me. She always used to have a scared look on her face before she had a seizure but when she’s in a Torsades and looks at you in desperation, it must be one of those ‘flashes’ moments. People say you don’t have any symptoms of cardiac arrest and Torsades means you pass out… I’ve seen Isla eating a jacket potato during a Torsades. I’ve also seen her lying there fragile and pale, terrified. I’ve seen her wince and cry out before it happened because she knew what was coming was going to hurt her. I’ve watched her deteriorate and grasp my hand. She knows, every time.

Everything has come back to the forefront of my thoughts, even prior to watching Greenland. Things have been very raw for a number of reasons.

Isla lost her first baby tooth on the 11th January. A huge milestone. One with repercussions I didn’t anticipate. For long time followers you may recall I once linked Isla teething to seizures… well lo and behold as she was cutting her new adult tooth, Isla needed seizure rescue medication. She didn’t actually have a seizure but her behaviour can only be matched to when she first started on Keppra and had Kepprage and we stopped it. The biggest difference this time is that her Mexiletine is so much lower and so her seizure threshold is higher. The pain she feels through teething though is so strong it would no doubt be the tipping factor for her. When I spoke to Dr Johnson he could only surmise that Isla feels such intense pain from teething as part of the ‘neuro spectrum thing’ whereby individuals tend to experience stimuli, sound, bright lights etc, in an amplified way. He did suggest some medications to help that creates is a kind of gentle neuralgia but for someone not processing signals correctly it would be very unpleasant. So we’ve been dealing with that… and know there’s a lot more teeth to come.

I’ve also been dredging up some of the past, writing a speech for the Rotary Club in the hope of boosting some funding for Great Ormond Street. GOSH has become more and more important to me, and again, this time of year, is on my mind. It was Valentine’s Day that Isla was first admitted to GOSH. Being guest speaker was a great privilege and I got to talk about my favourite thing in the world; Isla. However, it also reminded me of all that we’ve been through and how tough it’s actually been. Although I didn’t watch the videos of her having seizures, I saw them there. Although I skipped over the pictures of her in the darkest hours, I know they are there. I know what happened and often relive moments.

There is also the fact that February is heart month so everything in my online world is heart related. It’s great in the way that it raises awareness, but sometimes it is nice to not have how shit life can be thrown in your face. Every heart day, heart month, sudden cardiac arrest day etc, I say the same… every day is that for us. It’s always heart day in my world. There isn’t a day that goes by I don’t think about Isla’s heart. I have to give her heart medications 6 times a day. It’s always heart day in our house.

The premise of the film Greenland is that there’s a bunker there to survive the world ending event. I have great hope that we can get Isla to her very own Greenland. I really hope that we can maintain control of her arrhythmias and keep her safe. I hope there’s a medical breakthrough around the corner that will give Isla her own bunker and I won’t have to see that look where I know she sees the flashes. I always come back to the symbol of Hope; sometimes Hope is all we have.

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