Behind the smile

It's been a while!

I see my last post was written when I was 12 weeks pregnant and vowing to blog my way through the journey- and I meant it. Just like these days I wholeheartedly intend to have dinner ready on time, call that friend back for a catch up, put the washing on... the list is endless.  Life got busy. Truly busy! My, then, 12 week seedling is now fast approaching two years.  I will revisit the missing years now I'm finally back in blog, but for now, I have things to get off of my chest.

A little recap: I am Mrs T, happily married to Mr T with 3 step-goblins and now my very own goblin... more of a Tasmanian devil or tornado than a goblin, affectionately known to us as 'Crazy-Eight'.  I am now a stay at home mother, a homemaker, unemployed- whatever you want to call it is fine with me. I have Crohn's Disease- like it or not, this is a big part of my life and always gets a mention.

So, as any parent will know, this job is full time. 24/7, no holidays, no 'clocking off' and it is EXHAUSTING.  I had no idea just how much I could love a small person until he arrived but my goodness it's hard.  Throw health problems into the mix and life doesn't get any easier.  Don't get me wrong- I'm so very grateful to be at home with Crazy during his first precious years and some days we laugh until we are in tears.  We play, we dance, we sing, we shout, we throw stuff, climb, wiggle, shuffle- you name it, we do it, just for fun.  But some days are darker and it's all I can do to keep him clean, fed and watered and get through the day.  Yesterday should have been a long awaited 'day off'. Dear Mr T took a day off and paid for me to visit a day spa with my sister for a much needed break after he recently had some time abroad for work.  I was so looking forward to this day and having muscle knots pummelled out of my shoulders- pain... pleasure!  But unfortunately, I was refused treatment because I suffer Crohn's Disease, which is a story in its' own right and I get it, its for insurance purposes, they can't risk it (but could've kindly told me this at the time of booking when having Crohn's Disease 'wouldn't be a problem!' when it came to taking my money).  Anyway, what should've been a minor thing actually had me in tears all evening.  Poor baffled Mr T was asking with concern, "why are you crying?"

I didn't have the words to explain, and so I find myself here trying to find the words.  Writing has always been my friend when it comes to organising my thoughts and I'm not afraid to put them out there for anyone interested to read.

Some days are exhausting.  I have started a new medication called 'Humira' which is a subcutaneous injection once a fortnight to control the Disease.  It is a pen- pinch, 'click', count to ten, job done.  OUCH!! Seriously, ouch. Then the fire. Oh my leg IS ON FIRE! Oh my! What do I do? What do I do?!  This feeling continues for a good hour- I now try to ignore it and continue as normally as possible, especially with Crazy looking on with interest.  I don't ever want to instil fear into this small boy.  I want him to be able to take anything life throws at him and so he will see Mummy do just that.  So, injection done, I'll just go and... wait, what? I was going to... er... Well.  It's gone.  I guess I'll just sit down a minute, maybe it will come back to me. Ouch! Sitting hurts as much as standing.  Wow I'm tired.  Crazy is engrossed in a book.  I'll just shut my eyes for a second...

Woah! Where am I? WHERE IS CRAZY?! Oh, he's sitting next to me. Phew.  Right, I need to get him some grub.  I'll just go get some... wait, what? What was I doing? Where is Crazy?! Oh, he's there on the couch, he must be hungry, I'll go get him some grub.   What did I need from the kitchen? I can't remember.  My leg hurts. I better change the boy.  Hmm, he must be hungry...   you get the idea.  I call this 'The Fog'.  Its lasts at least 48 hours.  I daren't drive.  We rarely go out.  I don't feel safe.  Above all I feel incredibly guilty.  Poor Crazy is fending for himself whilst Mummy is a mess!  These are the 'dark days' when I just about manage.  Everything hurts.  Skull-crushing headaches.  Crazy shouting and shrieking regardless and who can blame him- Mummy is being BORING!  When The Fog has lifted I have a few 'good days'.  I am almost normal.  I almost remember how it was to be in remission.  Those good days are spent getting Crazy out and about, experiencing the World as a toddler should.  We go out on walks, get grubby, climb, race, paddle, roll... When the good days pass, we stay closer to home.  I can't be too far from a toilet.  I'm tired.  So tired my eyes hurt.  My joints ache.  My hair and nails are weak, I look a mess.  I'm emotionally unstable and it's all I can do to keep my cool whilst Crazy has a tantrum because the-slipper-just-won't-balance-on-top-of-the-guitar-Mummy-WHY?! The thought of climbing both flights of stairs to collect the washing to put on makes my eyes water.  I can't almost hear my knees creak as the searing pain shoots through them with every step and elbows ache at the weight of the clothes in my arms.  Keep going.  The floor is sticky.  Crazy has been using his yogurt for an art project on the hardwood.  I better get down and clean it.  Yep- you guessed it.  It hurts.  I had better steam the floor before the ants come marching two-by-two-hoorah. Ouch.  The washing has finished... I should hang that on the line.  My poor elbows! Maybe I will tumble it.  My poor knees.  Time to feed Crazy.  Whatever I make will almost certainly be discarded on the floor.  Which I will have to crouch down to clean up. Which hurts.  These things are boring to write about and so very boring for you to read about.  But all these little things add up.  When Crazy is finally in bed it doesn't stop there.  It's time to tidy away the day's carnage and put the house back together.  Then I should probably think about sorting out some sort of dinner for the rest of us.  When I finally sit down I see the sadness in Mr T's face as he reminds me he needs a shirt ironed for tomorrow- he knows I'm exhausted, but I forgot to do it and bless him, the man can't iron!  So up I get again.  When I finally get to bed, Crazy will probably wake.  If he is awake, I am awake.  The mornings roll around all too soon and I could burst in to tears as another days starts.  But I don't.  I burst into Crazy's room with a "Good morning handsome!"

Because I have to.  Because he needs me to.  Because it doesn't stop.  Because I love him dearly and I want things to be normal.  I want to be 'able'.  Because crying won't help.  But, you know, sometimes I can't help it.  That's why I'm crying, my dear Mr T.  Because I can't help it.  Crazy is in bed.  I can let go.  I'm steaming the floor with tears in my eyes.  I'm polishing the sideboards with a puffy pink face.  I'm vacuuming whilst sobbing.  Because it can't stay inside.  What should have been a little disappointment was a big deal to me.  What would have been a lovely day off was just delaying the inevitable.  When you see me getting on with it- I'm still hurting.  When I make it out- I'm almost always the first to leave.  Not because I don't want to spend time with you, but because I have to keep it together.  If you haven't heard from me for a while, the old cliché is true- 'it's not you, its me'.  Really it is- give me time.

I don't want sympathy.  I don't want 'poor you' and despite what I've written here I don't feel 'poor me'.  I don't have time.  I'm too busy worrying about Crazy- am I doing a good job? Should I do less of this or more of that?  Is he reaching his milestones on time?  Is he sociable/happy/fit/healthy enough?  Is he eating enough?  Will he fall off of that?!  I wouldn't change it.  I am exhausted.  I am in pain.  Sometimes I cry and get grumpy (sorry Mr T and goblins) but I'm still going.  I am happy despite all of this, overall.  Because I have my family.  I have time.  Time to enjoy it all at whatever pace I am able- be it from under a blanket or on top of a slide.  I am grateful.