Well here I am at the ripe old age of, nearly, 43 and writing my first blog. I am questioning why I am opening myself to the world of blogging and have came to the conclusion that I needed to give my brain a break from my crazy world and let this social world take the hit instead!
You see life isn’t simple, but then again whose is? But mine seems to be extra crazy when trying to bring up twins, one with special needs , coping with my own crippling illness and being a single parent. I’d like to say I have lots of support but unfortunately I don’t as my parents live abroad and the boys father, well the less I say there the better but I will just say that he won’t be winning an award for Best Dad or Most Understanding Dad anytime soon, but he’s definitely a good Dad or so his mum keeps telling me!
So back to my crazy world, lets start with last Monday. It started off well enough, until I had to take my youngest son for a blood test, I say youngest he is actually a twin but was born 10 mins after his brother and believe me that makes a big difference in their world, or so they tell me.
Now I hear you say well whats crazy about that? Well you see for me, when my son has a blood test it actually turns into something like a war zone, with tears, tantrums, anger and fear, and that’s just me!
No I am joking, its my son, who has an abject fear of needles and anything connected to hospitals, you see my son has complex medical problems and spends his life flitting from one hospital, physio and occupational therapy appointment to another, that’s also not counting counselling and other places we have to go to!
You see, In his short life, he’s only 13, he has had over 10 procedures already and is currently fed through a tube into his stomach, at night to help keep his weight stable. He is allergic to most foods and doesn’t absorb the nutrients he needs to thrive and as he cant eat much he needs the boost of the Enteral feeds he gets at night. He also has other complexities surrounding these issues so hence all the other appointments. Oh and they haven’t diagnosed him yet, they just class it as Allergic Gut Reaction, basically they haven’t a clue why he has all these problems. I think I do but as I’m only his mum my opinion doesn’t count apparently! But we will see as I’m on a mission to prove them wrong!! So watch this space!
So a little introduction, for you, to the craziness that is our world, between now and June, between the 3 of us, my other son is now showing similar signs, I have 15 appointments to attend with one thing or another. Since Jan this year I think I have had at least another 20 that I’ve attended for either me or my son. So life is a tad busy!
I mean, tell me, is it bad that you are on first name terms with not just the cleaners at the hospital, but the porters and Admin staff! There was talk of dedicating a parking space just for us, as we are there so much, but there was some sort of objection from the CEO of the hospital, something to do with it being his personal parking space or something? I don’t quite understand his objections, with the money he’s on he can afford to park in the car park, unlike us minions! Its cost me £10 this week to park for 3 appointments, no wonder people call ambulances at least then you don’t have to take a loan out just park for a few hours, you just get dropped off and wrapped in a blanket while you wile away the hours waiting to be treated!!
Anyway I digress, so this is part reason why I thought I’d start a blog because half the time I don’t actually, quite believe how hectic my life is and I’m sure my family and friends don’t believe it either and just maybe, there are other parents out there feeling just as over whelmed, frustrated and tired of living in a world of uncertainty, illness and lack of understanding of what life is like as a parent of a Special Needs child!
So I will try and share my hectic life with this social world and maybe this will help get my chaotic life in to some sort of order and make me realise I’m actually not alone in this world of illness that having a Special Needs child brings!
Oh have i mentioned yet that I am also ill and currently fighting consultants for a diagnosis along with my son? No? Well that’s for another day, I can’t give everything away in my first post as I hoping you’ll come back!