It’s been 3 months since Isla’s cardiac arrest. Lots of things and scenarios replay from that day. I still have flashbacks and have times when I struggle but I don’t think there’s much I can do about it. Some days I just feel exhausted and I know it’s purely because of stress… it could also just be because I don’t sleep as well as I should (sometimes barely at all) but what parent does? Scratch that, what adult does? At some point in life, we became adults and could no longer recover from a hangover in one day, and entered a daily competition about who is the most tired. Ooh and all of a sudden started making noises when sitting down, or getting up.
Let’s face it, most of the last 3 and half years have been traumatic, with some particular events standing out. I’ve spoken to psychologists along the way and talked about the ordeals we’ve faced. Talked about the emotional anguish of being told to go and say goodbye to my newborn because they wouldn’t resuscitate her again. Talking about the hearing emergency buzzers and seen them pulled for my baby. Talked about seeing our hospital room flooding with doctors. Talked about seeing my baby having a life saving shock. Talked about performing CPR on my little girl who was lifeless on my lounge floor. I’m not listing those things to push the sympathy vote. These are things that float around my head. I’ve spoken to people but how do you deal with that? By ‘grounding’ yourself and listing 5 things you can see, 4 things you can touch etc? Doesn’t cut it. I’ve replayed Jan 26th hundreds of times since it happened. Believe me, listing 3 things I can hear and 2 things I can smell doesn’t bring me out of an anxiety attack. I don’t know if it’s because I don’t buy into it, or doing that technique just pisses me off (maybe that’s the intent of it to distract you). Think of 2 things I can smell… it’s either toast or Isla’s arse. And if it’s Isla’s nappy, that’s the only smell I’ll be able to smell in the room for a few hours. Similarly, 1 thing I can taste. Something you can taste!? I can’t think of that now and I’m fine, and I know I just had some toast and jam! Again though if Isla’s scented the room, there’s nothing you can taste other than her smell. Although forgetting to have a drink all day gives the same taste so that’s really the 1 thing I can taste anyway. Basically, shit is one of the answers for every category in the grounding technique. I taste shit, smell shit, hear shit, touch shit, see shit. Is this because there’s no other way to describe things sometimes other than ‘just shit’?
I know the end result of that day. I know Isla is ‘ok’. In some ways it’s led to her being safer but I’m definitely not thankful for that day. I’ve used all the techniques that have been recommended but none of them work. The only thing that works is seeing Isla smile. The only thing. All this is on my mind right now because we are in the process of organising and finalising plans for Isla to go to nursery in September. I’m definitely feeling some separation anxiety. At the moment when I can’t see Isla she’s only a phone call away. She’s either with her mum or grandparents. I can know how she is all the time. Although I’d never forgive myself for not being there, I know she’s in capable hands of someone who loves her. Sure they’ll look after her at nursery and they’ll contact me if they’re worried, but it’s not the same. I’ve not got that instant reassurance when I do panic. It’s no easier for me knowing she has an icd. If she has an arrest it’ll bring her out of it but it won’t correct the underlying cause so she’ll get shocked and shocked and shocked again. Aside from her being in Alder Hey or GOS I’d only ever feel confident if she was with me, if I was in control. The team at GOS wanted to relieve me of that responsibility, to allow me to be Isla’s dad and not her doctor. While I am grateful for that, I’m now not in control and I hate that. It’s my job to keep her safe.
I recently shared an article about a little girl in Michigan who died from a cardiac arrest while on a water slide. It seemed to reignite all the worries from everyone in the Long QT community. First off I felt such sadness for the family. Rest in peace sweet girl. It’s not fair. Second thought was to immediately place Isla in the situation. This little one died from excitement. Essentially from the emotion of being so happy it triggered a fatal arrhythmia. It’s scary. It brings the whole ‘living life/staying alive’ debate round. I know she wasn’t diagnosed and had no protection but it’s such a jolt back to how serious Long QT is and I know how severe Isla is. I want her to be happy and love every minute of life, but I don’t want one of those minutes to kill her. It’s such a fine balance. YOLO vs YOLO… You Only Live Once (so enjoy it) vs. You Only Live Once (so take care). Isla gets super giddy going on a swing; she loves it, I don’t want to restrict her from something she loves so much, I have to trust her medication and her ICD to do their jobs. That adds to my daily stress. However, from that point of view I suppose my job of keeping her safe is done; we’ve got her to the point where she could have the ICD implanted and there’s not a lot more I can do other than the usual parent stuff like not letting her eat batteries or walk into the road. Life is so brittle anyway but on top of that Long QT sucks.
I don’t mind admitting I’m suffering post traumatic stress. I think most parents I know from Alder Hey have suffered/are suffering with it. We’ve been dealt a shit hand. However, Isla is still here and some parents aren’t so lucky. My ordeal is nothing in comparison. This leads to conflicting feelings. How can I feel bad when everything is ok? Yes I don’t have a hand of aces or faces but it’s decent enough to bluff and stay in the game. Then I wonder how many other people out there are simply holding a pretty shoddy hand and bluffing? There’s certainly people I know on social media who portray a peachy life when the other side of that peach is bruised and rotten. I only really post pictures of Isla (and occasionally myself smiling), I’ve rarely posted her crying or upset. I’ve not posted myself having an anxiety attack. I don’t want people to see our hand, it is what I tell them it is. Post traumatic stress or not, shit hand or not, life is what it is and I’ve got Isla’s smile, and that’s all I need. I remember one session with the psychologist pretty early on and she asked what matters most to me right now. My answer; for Isla to be happy. If she’s happy, I’m happy, I can deal with everything else. Sometimes, it’s ok not to be ok.