Revelations of a Slummy Mummy

OK, so a few people have expressed an interest in the exact base level nature of B’s disorder, right down to what precisely it is that causes him to be so different from all of us neurotypicals. Neuro=to do with brain; typical=usual, regular, common - sorry folks, in the world of genetics you and I are pretty damn boring. Let’s picture an ice-cream sundae. Proportionately us neurotypicals would be the ice cream and the special atypical a=not, typical=see above lovelies the sprinkles. So first up, people with B’s condition are RARE. The prevalence is estimated to be around one in thirty or forty thousand. So, for every 40,000 babies born, 1 might pop out like B. To give you an idea in real terms, Down Syndrome occurs once in every thousand births, DiGeorge (considered a relatively rare chromosome disorder) occurs once in every four thousand births. You can see where I’m going with this. If I asked you how much information you know about cats you would probably reel off ten facts witho...

Right now I’m taking a break from the copious amount of admin I seem to be slowly drowning in and coming up for air via the snorkel of this blog. First up, I’m proud to say WE SURVIVED! By survived I mean we got through the full 60,480 minutes of the school holidays in one piece; alive, breathing, and relatively unscathed. I wouldn’t go as far as to say we got through it well, that would be an altogether different scenario. The reality is the matrix of destiny (aka the calendar) that dictated who was where at what time and for how long left its inevitable imprint on our uber tolerant children. Like a game of human Tetris any deviation from the perfectly tessellating plan resulted in it all spiralling out of control pretty quickly. D and O were fairly amenable, but BH did not take kindly to being shunted about like a heavy piece of luggage. Holidays for us do not equal lazy lounging days or fun spontaneous day trips. They involve a carefully executed master plan of action, involvin...

So today would have been my mum’s fifty-sixth birthday, but she never made it this far. For whatever reason, she had to go at the tender age of fifty-four and a bit. It also happens to be my daughter’s ninth birthday- I can never quite decide whether that was poor planning on my part, or a decent hand well played by Fate. We ate cake for breakfast, made pancakes, and I waved O off as she merrily left to visit her grandparents. I hung out with my little sister; we had lunch in a café we occasionally visited as kids, that happened to be re-opening today after a lengthy refurb * cue spooky music * bought flowers and took them down to the river where we launched them one by one (speedily-sorry mum) in the pouring rain while saying ‘Happy Birthday’ in as many different accents as we had flowers. We know how to live, the little sister and me! The ducks were none that impressed when they quickly realised that the lilies weren’t the bread they’d been holding out for, but other than that a fa...

So lovelies. Today life sucks. I’m not asking for pity, or sympathy, or any of that mushy stuff; it is what it is. I think it’s down to a combo of factors; tiredness, getting shredded on a daily basis, missing family and perpetually grieving the life we watch everyone else with kids our age living. By shredded I don’t mean that 30-day shred phenomenon that’s been going round on the app store; purposely putting my body through torment on a daily basis is something I can live without. Funny that. Shredded is perhaps too harsh a word but for the last three months my arms and the arms of my kiddies (particularly the littlest) have been covered in claw marks and small teeth imprints; the physical manifestation of the frustration my boy must feel constantly. We are entering the fifth week of a medicated B, and so far we are still seeing multiple seizures every day, with new types developing on a regular basis. I’m the reincarnation of Scrooge and Christmas when people mention their excited ...