This is our sons motto at the moment, this is not making for an easy day for two parents with auto immune illnesses in full blown flare. When we flare we literally feel like someone feels with severe flu, perpetually tired, hot then cold, aching every where, there are places aching I have no appreciation of existing until flare ups happen.Our joints go into pause mode, they actually forget to work and in my case my kidneys decide to slow down as well and I get a blusher mark just below my eyes so I look like I have overdone blusher!
August is Stills Awareness month (also known as Juvenile systemic arthritis and nooooo it is nothing like old person arthritis pls watch clip).
Still life goes on, as any parent will say "you can not afford to be ill",it is one of those jobs where you can not tell the boss, aka a 19 month old son, that one is too sick to come into work! It is tough, you have a child and there is no option but to get up every day and get at it,if it takes you ten minuets to just undo nappy straps to put a nappy on your child then that is how it has to be. A baby does not have the cognitive ability to have sympathy for your plight and as a toddler they don't see the dark circles and pained faces, to them you are fun time mummy and daddy whatever the day, whatever the time and whatever the situation.
So today Daddy is on entertainment mode, playing his Ukelele, am going to start calling him Gabriella the frog from Bagpuss, he has been on the Uke all day playing songs from Pink Floyd to The laughing Policeman. Meanwhile the not very at tentative audience invests in some good old fashioned wrecking the joint with toys, looking under the sofa and pushing car keys right under it (the keys will stay there until we can get our steroids high enough to touch our flare ups in order to shift the sofa), posting things in the dogs mouth who spends the day running backwards and forwards with items from son to me, even if am on the loo, my dog opens the door bold as you like and dumps given items on to my lap, I feel I need to suggest to her she stops entertaining this game! The digi box for the TV has had various buttons pressed on it and there are a pile of bricks in Daddy's walking shoe! Hehehehe ahhh the madness, as someone posted on Facebook recently "Having a toddler is a bit like putting a blender on and forgetting the lid"!
The above clip is a childhood loved programme in the UK called "Bagpuss".
Not every day is about difference and disability or being inventive with caring for a child etc. Most days are just about getting on with the day, laughing with our son, sometimes laughing at him as he pours yogurt over himself, that's right we are teaching him to feed on his own now too to add to the mayhem ,but then again, on days like these our son can at least hold the spoon which our hands seem to be unwilling to entertain on flare days!
Some days are spent trying to co ordinate grocery delivery and perpetual frustration at there never being enough bread or milk in the house! On occasion my annoyance at the over flowing amount of baby vests we have collected, half of which we can not work due to stiff poppers, half that should have been binned as you can almost see through them,makes itself known to the household! Most days are about building blocks, playing playdoh, reading to son, teaching him to read, playing games. On top of aspiring to be über great parents like every other parent in the world, we also try to make time for us as a couple, that is if we don't fall asleep with one another on the sofa at the end of the day which is often the case. Still at least we know we work together for the good of our child and one another,we are strong together as a couple,we have to be as we both have an awful lot to go through both in the present and future and our son needs to learn through us that it is all ok, that he has nothing to worry about. Mark and I share the same values and core constructs both as parents and as individuals. We all do our best for one another,even our son tries by bringing hefty books to me on our bed whilst my leg has to be held up most of the day.We still have something to give to friends who are about to arrive any second.
Mr No snooze is gearing up for maximum audience participation to the trashing the room project!
Life as a parent, wouldn't change it for the world! :D