Isla’s recovering from yet another surgery. The last possible surgery before they consider giving her a heart transplant. However, it’s not just Isla who needs to recover.
Hypothetically, Isla is now as safe as she possibly can be. She’s made some fantastic leaps in her development despite missing nursery because of this bastard virus. Yesterday she gave me the best eye contact I’ve ever had. So why do I feel so broken?
I know people have bought pointless stuff during this lockdown but I’ve gone next level. I literally have parcels arriving every day, some of which I have no recollection of ordering. Retail therapy of sorts as if spending money is going to make my anxieties disappear. One day the Hermes man might turn up and deliver a cure to fix me or Isla. I say deliver… if it’s Hermes it will be thrown somewhere near the house in a drive by style shooting. If it says fragile he makes a special effort to get out and then it will be drop kicked towards the house from across the street. Hermes are good like that. I’ve honestly bought so much crap. It doesn’t make me feel any better.
When I was speaking to the cardiac nurse specialist to make arrangements for Isla’s operation she offered me to refer me to psychology. I was tempted to take her up on it.
In many ways so much has changed for Isla since I last spoke to psychology; nothing has changed for me.
Am I worried about Isla starting school? Soon I’ll have to deal with her being in school all day long and not being able to see her, that’s ok because I trust the staff at school. In honesty I don’t see Isla much in the morning bar the first few hours anyway as that’s when I get my respite and sleep to make up for the lack of sleep during the night. Isla generally gets 12 hours. I often get 3 or 4. C’est la vie. I will have some separation anxiety for sure. I can count on one hand the number of times I’ve spent longer than 12 hours away from her since she was born. However, I can rationalise that fear and I know school will be great at helping me and will contact me if anything seems amiss.
The only course of action Isla has left is the transplant. It’s extreme. I really don’t want to go down that road. However, it’s not the 1800s. I know of lots of successful transplant stories. When Isla first moved to 1C the boy next door was in a bad way and was awaiting a transplant. He’s now thriving. Another boy we met on the Ward is the same; doing so well. So if it comes to it I know it can be a game changer and although it comes with it’s own pitfalls, if Isla’s heart is going to keep going into VF and she’s going to keep being messed up by toxic doses of her heart meds then it would be for the best.
She’s not hitting anywhere near her developmental milestones and is showing so many autistic markers. Does it bother me? Frankly I don’t give a shit. She’s making progress in her own time despite everything she’s been through. She’s such a happy, loving little girl. I know children who are way ahead of the curve and are no where near as happy. Of course I want Isla to live her best life and have as many opportunities as possibly but I also know that she’s made huge strides already and will continue to do so. Time is a long word. I mean I still struggle to watch children her age or younger doing things I ache for her to do. I’ve literally thrown my phone across the room, even recently, when I’ve been sent something or seen something of other kids. It’s not fair all the shit Isla has been through and how she wants to communicate but can’t but then she smiles or laughs and reminds me that none of that matters. What are we on this forsaken planet for? To make money? To work hard? To ride a bike? To climb a tree? Or to be happy? If I died tomorrow having accomplished nothing but being happy the whole time, I’d say I’d had a good life.
But that’s the thing. I’m not happy. And I don’t know why. I’ve rationalised all my fears and thoughts. And it doesn’t make it any better. I’m still smiling outside but screaming inside. Some days I hate the world and everyone in it. Send the white coats. Some days I just want to be a little boy again and play games on my computer all day and forget about adulting. Holding Isla is one of the only things that gives me peace but I also know it’s so fragile. She is the bear because she’s made of hard stuff, however she’s also seconds away from not being here. That’s hard to take. It’s not an irrational fear. It’s a reality. She’s got her ICD to bring her back from dangerous rhythms but even as a bear she can only take so much. It won’t always work and bring her back. I saw an Instagram post where they said they liked to think ICD stood for I Can’t Die. I resisted commenting, ‘Yes, yes you can!’ because who does that help? If that’s the positive mindset they want to have then good for them. I can’t think like that though. I’ve been through countless traumas and it’s ongoing. I have so many people to support me but I sometimes feel like I’m flailing. Even when someone asks ‘is there anything I can do to help?’ I can’t think of anything. There’s literally nothing left to go in place for me. I don’t want more of a break from Isla because the whole time I’m away all I want to do is see her and know she’s ok, so it’s really counterproductive. I don’t need anyone to take her off my hands because then I feel even more useless as a dad. However, as a man I know I also need some balance in my life. I can’t just be dad/doctor to Isla. I need some time for myself and to have other relationships. I want that but I’m scared and I know I’m pretty messed up and lot for someone to take on, even for friends, because I’ve pushed so many people away or kept them at arms length. I don’t want people to see the smiles are fake and see I’m struggling. I want to be able to cope and I don’t want people to take pity on me.
The smiles you see on Facebook and Instagram are often genuine because I’m holding Isla and that makes me happy. A smile can hide so much though. Don’t worry, I don’t need to be on suicide watch. I wouldn’t do that because I couldn’t leave Isla. I’d hate to think of what would happen to her if I wasn’t here. I know lots of people love her and would look after her, but I’m the Isla expert and she needs me so trust me, I’m not going anywhere. I’ll keep smiling. A smile can be the best thing in the world. It can also be the most dangerous. In this way Isla is like a smile. She’s the best thing in the world, but she’s also the most dangerous. A smile, fraught with danger.
The Long Cutie 