[W]hen it's quiet I can hear myself think. It's a useful tool for checking that my brain is still there and functioning beyond merely barking out orders at whatever child or animal is choosing to ignore me at the time. It's also why I'm normally chronically sleep deprived, now more than ever.
I've had a few letters come through the post that have given me more than usual to think about. Letters that sit next to me on the sofa for days as I try not to look at them. I'm used to the letters about Dominic, I digest them and then file them or act on them depending what the circumstances dictate. The majority of the letters that have been arriving recently have been concerning Elliot though, and for some reason I'm finding this harder to file away, both literally and emotionally. It's rather like being dragged back to the beginning of this journey again, with the burgeoning horror, as the letters keep on coming relentlessly reminding you that there might actually be something wrong with your kid after all. For those who haven't gone down this road it may sound strange that this thought might not have occurred to you earlier on. After all you yourself have raised the concern, seen the doctors, shared the history and agreed to the tests, so none of this is new information. But as a parent, you more often than not do this in the hope that your concerns will be unjustified and you'll be sent away with a telling off for wasting the doctor's time. The black and white reality of a letter can be a cruel reminder that sometimes you are not.
These letters have picked rather a inopportune time to arrive on my doormat, well I say doormat, I mean mangled metal sink rack hastily duck taped to the door to protect the postman's hand from meeting Chloe's teeth every time a letter dares to try and poke through the letter box (we must be saved from those letters don't you know). They have arrived just in time to join a very medically-depressing pile of paperwork. On my pile is Dominic's educational statement (school's side) and the educational statement from my side, his exceptional needs funding paperwork and his disabled living allowance which are all due for renewal. This basically means that I get to spend a month or so of each year telling faceless officials about every way in which Dominic's life is more crappy than his peers. There is no way of sugar coating it, it's part and parcel of trying to provide the basic things that other kids have, you know like a school place, so no pressure or anything. I may in fact look back on these days as being the heady good times in the future though, if some of the worrying things I have read about the proposed government changes are to be believed. Yet another thing to worry about. The government really should have an advisory panel made up of disabled members of the public and parents of disabled children, just to make sure they don't cock it up completely. The last thing anyone needs is the creation of yet another monster that in fact makes life harder. But anyway, that is a worry that will have to be shelved for another day.
I told myself, over the weekend that I wasn't going to do the blog hop this week. With three children all now going to separate appointments, all with people who want to give me things to do with them at home, and then all the other paperwork that wags its finger at me every time I try to ignore it, making sure the school film club goes ahead even though someone decided to hide the film at the last moment and trying to fit something fun into the weekend for the kids (to make up for me having my head stuck in paperwork at every opportunity), having 11 chicks hatching, 5 of which needed me to perform an assisted hatch which I was so sleep deprived when I realised that I was going to have to do it that I was half traumatised by the time I got to bed in the early hours of the morning, having a broody hen rejecting two of her chicks and finding them on the brink of death (they both survived), having a chick that you rooted for, helped hatch and celebrated the fact that it was doing so well suddenly keel over and die for no discernible reason, and then having the cat attacked by something but no way of getting them to the vets until morning and to top it off having one of the neighbours scowl at you in response to your smile as you are passing and I thought it might just be reasonable that something might just have to give. If you managed to read that sentence on one single breath you'll be experiencing what I'm feeling right now (a rather panicky suffocating feeling).Yet here I am, nearly 1.00am, eyes dry and tired and feeling the need to explain why I haven't posted the blog hop. Although I'm now wondering why on earth, having written all of this, am I not just posting it anyway, and just having it run for a shorter time.
Ok then, that's decided. Please find the (much more compact) blog hop for this week that will be a mini one to tide us over until hospital appointments, forms and another Great Ormond Street stay are out of the way, which I am trying to convince myself will be Saturday.
So here I am, tiredly, relying on you to share your freaky, wonderful, normal lives to keep me whistling this week away, when I'd far rather be blowing raspberries…
Why not join in?
To learn more about the reasons that I started the Define 'Normal' blog hop click here. If you would like to join in the blog hop and tell us what your normal is like click on the link below and follow the instructions to add a link to your post. The subject of your entry is up to you, anything goes, show us a photo, a picture, dust off an old post that talks about any aspect of your normal life. Please link back to this post or duplicate the linky in your post to make sure the entries get as many views as possible. Don't forget to tell us all on twitter using #definenormal and feel free to post your link on my Facebook page once you've linked up!
Last week's amazing entries