Background info can be found RIGHT HERE

I want to preface this post by saying it’s taken me over week to put my thoughts into some semblance of order. And right now, I’m feeling too much at once, and I don’t know what to do with it. Because I’m pretty sure everyone is sick of me by now. So, I’ll retreat into my head, into the quiet… except its not really quiet. It’s full of every little thing I’m currently overthinking. So… to stop that, I’ll pick up the thread of the latest story I’m working on… this isn’t new. This isn’t… oh Stacey’s got her NICU records and is being dramatic again. Nope. I’ve done this my entire life. You just don’t see it. I made up stories. Wrote them down. Retreated into books long before that. Read Alice in Wonderland cover to cover far too many times and Oliver Twist. I still hate Wind in the Willows, But I still have that book. I’ve known since I was a teenager that writing was a coping mechanism. I just didn’t have all the pieces as to why it was a coping mechanism. 

Which is kinda where the NICU records come in. Sure they were totally to help understand where the cyst fit in. They really were. Because, that really hasn’t been fun to navigate over the past eighteen months. Only problem was, I wasn’t expecting everything else. I really wasn’t. The universe sure does have a twisted sense of timing though. That… or maybe there really is someone looking out for me. It’s too early in the emotional jet lag to say thank you. I still want to rage. I’m not doing crying and I want to really really want to kick something… or someone.

I still don’t get how I survived it. I mean, I do. Medical intervention is a hell of a thing. But a Grade 4 IVH? Come on… I don’t get it. How!?

I can’t remember if luck was ever thrown around when I was younger. God, I know I used to throw it around with my daughter. No brain bleed in her case. She got steroids (I didn’t). She still got ROP though, I think. And she wasn’t a menace like I was. Or was it trouble. Either way. “Her brain is fine.” Noel’s words not mine. 

It’s strange how the past finds you just when you’re trying to make sense of the present.

I knew it was bad. I heard how I was “special” growing up. How the doctor’s didn’t know why I came early. Lie. My mum had a bleed one week prior to me being born. She probably had a placental abruption and started contracting and they couldn’t stop the contractions, much like my daughter. Redacted file. The doctors knew. I’m sure of it. There’s always a reason.

I don’t get why it’s such a shock honestly. I mean, a part of me does. Because, I’m not sure I should be here and I don’t know how to reconcile that with the fact that I am here.

Because I didn’t just survive a Grade 4 brain bleed. I survived sepsis, a bilateral pneumothorax, anaemia, seizures, PDA, blood transfusions, dehydration, metabolic acidosis, HMD (or RDS), and Grade 1 ROP. I survived.

But then I got to the part where some of my child development reports were included, and the past caught up with me in double time. The doctors seemed to rule out cerebral palsy for a while, but the fact I have “mild cerebral palsy” now must mean they settled on it. I don’t know what tipped the scales in the end. At one point I was about 12 months behind in my development. My mother never let go of the possibility of me contracting AIDS, from the blood transfusions I had to have despite reassurance from the doctors, nor the fact that the doctors noted borderline retardation. I think she died thinking I was stupid, and I both resent and hate her for that. I’ve carried that my entire life. I’ve hid from that my entire life. Is it any surprise I turned to writing and stories and prefer to get lost in the worlds and people I made up in my head? It was hurtful enough being called pathetic and stupid growing up when she was drunk. I could almost excuse it. But I’ve learnt a far bit since she died, and you know what, maybe I don’t forgive her, and maybe I’m okay with that. Or at least I will be eventually. What’s that saying? Information is power?

I think that’s what’s hit me the most: seeing her “concerns” on paper, seeing the doctors write that despite the odds, it could have been worse. I survived. My brain rewired itself. I guess that’s one way to put it. Sitting here, looking back over everything. Going down a massive rabbit hole, the pieces are starting to fit. It’s ticking boxes I honestly didn’t see before. All my life I’ve always been able to explain away my personality as a premmie thing or a CP thing. I knew I was weird and awkward and shy. I was bullied because of my disability. My grades suffered because I was premature. Because of developmental delays etc. But what if it’s not just that? There’s other things. Stuff that doesn’t always get picked up. Things like walking into work and not verbally saying anything. In my own defense it’s a busy call center and I didn’t want to interrupt but in proper social circles that’s actually rude. Yeah um… oops. Don’t worry, I greeted everyone in chat. (lol) Maybe that’s why my granddad always greeted me whenever I walked into his house, without expecting me to say anything first. But if it’s not the social norm… then maybe what I’m dealing with is autism and adhd and because it was the 80s and I was so very very prem and so sick and a girl it all got missed.

So… that’s where I’m at. The rabbit role kinda stops and loops back on itself from here and its maddening. I don’t know how to get comfortable with it. Any of it. Not my disability. How do you stop running from who you are when it’s all you’ve done your entire life? No answers. Only puzzle pieces that are starting to fit, but still leave me feeling like I’m just the quirky girl who’d rather be reading or losing herself in stories of her own making and gets mad when she can’t. Deep down I’m still me. I believe that. But my ability to overthink and hyperfixate and just straight up dwell are going to be at war with with for a while. I can feel it. I need an adultier adult. Somebody send help, because, I’m going to need it… and if you think you’re sick of me now… haha… please don’t unfollow me.

And as for all things migraines… the neurologist doesn’t think the migraines are epilepsy or seizure-related. Which might be a relief if the meds I was prescribed would actually work. Since I’ve been tracking my migraines by way of an app, I’ve had a persistent migraine for over four days. I tried to tell the neurologist they don’t go away, that they are with me pretty much constantly. I guess this will show him. It’s hard to be upbeat when the week ends on a pain spike. Which is ironically where it started.

Was I hoping for some kind of magic wand? No? But I was hoping for meds that would give me a bit more relief. Yes. The combined effect of Panadol, Topamax, Propranolol, and Imigran have managed to either make the pain worse or keep it at it’s current levels. And all I want is for it to stop completely. 

–