February is Heart Month. Doesn’t seem like long since Cardiac Arrest Awareness month in October. I don’t know who decides on these things like what month is for what and what day celebrates what. I would assume February is Heart month because of Valentine’s Day. Valentine’s Day being the 14th possibly because in Middle England (near Mordor) the 14th was generally accepted to be the start of bird’s mating season. It is also thought to be the burial date of Saint Valentine… I prefer the birds boning theory. Reality is for those living with Congenital Heart Disease (CHD) will raise awareness and chirp (see what I did there) on about it but unless you’re affected by it, you really won’t give a damn. It’s a sad fact, and it may not apply to everyone, but you see it with every disease. How many people run a marathon to raise money for Cancer; unless their lives have been affected by it in some way. How many people are going to change their life style habits, do CPR training, get their heart checked, just because my little girl is unfortunate enough to have a sucky condition… I’ll go out on a limb and say – 0.
Doesn’t stop us doing it though does it!?
As I said, for me, every month is Heart month; not just pigeon sex month. This February seems more like a Heart Month though because Isla will be having her sympathetic denervation. It’s a key hole surgery and although pretty low risk, it’ll be a surgeon with a camera, burning away something which attaches to Isla’s heart. I’m terrified. I’m always terrified; It’s something I battle every day. Some days are better than others and I just try not to think about it. Morbidly, every day could be the last day for any one of us. Every breath could be the last and every beat of our hearts could be the last one… so why worry; Live life and love life. Other days I’m extremely aware that Isla is higher up on that risk ladder and although every beat could be the last for all of us, for her it’s a very real possibility. I was gutted that her procedure was cancelled because although I wasn’t convinced about it’s benefit in the beginning, I now see it as the only way we can get Isla safer. I have barely slept since. Isla on the other hand, still bounces round regardless!
I’m having a bad time at the moment and it’s for pretty selfish reasons. Sadly, one of Isla’s classmates at nursery recently passed away. Isla goes to a special school where a lot of the children have complex needs and the little girl was very poorly; it doesn’t make it any less sad. I said selfish reasons because while the first reaction is sympathy for the family and sadness, the overriding emotion reverts to empathy. That could be Isla, I could be the one giving consent to school to let them inform other parents. It shouldn’t be about me, but it ultimately goes that way. The deputy head told me that it had been a massive milestone for this little girl to even be able to attend nursery and she had many happy times at school. This really hit home. There were so many times I didn’t think Isla would reach school age. There have been times since starting school where I didn’t get think she’d make the next day. However, the fact she loves school so much and she smiles and laughs there every day, is a comfort to me. I know that if anything was to happen to her tomorrow, despite all the shit she goes through, she would have smiled more than she cried. I never thought I’d be able to leave Isla for more than a few hours at a time, but the team she has around her at school gives me confidence to leave her in their care. Again, I think, if god forbid the worst happened, she would be with people who truly care about her and love her; and vice versa. That’s a huge thing for me. Her carer and her key worker are both amazing… the whole staff are to be fair, but she has such a lovely bond with her key worker at school I’d be comforted knowing that Isla was with her. That feeling is honestly priceless.
So February 18th we travel back down to London so someone (a very skilled someone) can obliterate part of the adrenaline gland going into the left side of Isla’s heart. It will essentially take away the fight or flight response from the heart so a sudden surprise or pain shouldn’t cause her heart to fibrillate. As we came away from the cancelled op, walking to Euston station, a bin lorry beeped at a car trying to cut into his lane… we all immediately looked at Isla to check she was ok. She was but I’m sure all of our hearts had a little flutter as a result. Taking away this element of fear will be a great relief for us all. Maybe one less thing to worry about.
Of course we have to get to London first. This isn’t a given when Grandma is coming with us. I say this because on a recent trip down she attempted to hi-jack the train. After going to the shop carriage she messaged me asking to go get the guard because she was stuck and couldn’t get back to us. The path back was suddenly closed and restricted access. On a train where there are no left or rights, just forwards and backwards, she’d managed to get lost and instead of making her way back down the train she was trying to barge her way into the driver’s carriage. This is problematic enough on it’s own, however, as when we came back last she sat so we would be facing forward, obviously expecting the driver to crash the train through the crowds of people waiting at Euston, the result of her being in charge of the train would be catastrophic. It’s a good job we love her.
The surgery also relies on the occupants of Great Ormond Street from not clogging the toilets. Anyone who has been to GOS will know that the toilets outside the wards are out of order. Always. They might get fixed once a week, but it generally lasts one lunch time. The food in the hospital canteen isn’t actually that bad so I don’t think it can be blamed. Maybe it’s the fact everyone waiting outside the wards are nervous. I don’t know. Still, you wouldn’t expect one of the world’s top hospitals to have all its cardiac operating theatres closed because of a sewage leak. We honestly thought her consultant was joking when he told us. He is a bit of a joker… not in the Joaquin Phoenix kind of way… and since Isla was gowned up and we’d spoken to the surgeon and anaesthetist we genuinely laughed when he told us. A sewage leak!? Fingers crossed for the return visit please!
I’ve not really done anything to promote Heart Month have I? The cynic in me (so actually just me) knows only the people already aware will care, everyone else will give it a token like and carry on with their lives until the day unfortunately does affect them. If you’re reading this, just so I feel like I’ve had an impact other than a rant and inform you that by celebrating Valentine’s Day you’re actually just celebrating Falcon Fornication Day, Swallow Shagging Day, Robin Romping Day – feel free to add to the list – please look into CPR; even if it’s watching an online video. It may save a life of someone you know. You don’t even have to give mouth to mouth and catch Roger’s Herpes, just pound on his chest to get his heart pumping blood around a bit (it’s a bit more complicated than that, but not massively).
The Long Cutie 