Friday 22 January 2016

Well, mummy

Well its been while, 

Who would have known that huge, expanding and wriggly belly was actually a real life human being? They don't tell you that do they? Not that I didn't know I was having a baby,  but associating this fascinating little creature I held in my arms to the tickling butterfly nudges and rolls that flourished in my tummy for so long, I  couldn't quite connect the dots. I suddenly have this beautiful little girl.. who's is she? Is she mine? Did I make her? How is that  possible?

Those first few weeks of sleep deprived and hormonal torture had me sitting and staring at her for hours, always with pure love and sometimes out of odd wonderment.  The constant need to remind myself.. oh yes.. that's my baby. She's mine? Ours? Really? I imagine it's  a feeling all new parents can relate to but for me it was because I was trying to accept a reality that I thought I would never have. When I was pregnant I found my mindset was a obscure mix of a realistic optimism and a 'i'll believe it when I see it' mentality.
Barely ever did I let myself believe this would be real, as I stretched and swelled and got kicked from within, as I saw her in black and white waves, bubble blowing on the ultrasound, as I washed and folded and breathed in the smell of her tiny clothes in preparation.. I closed my eyes and absorbed each moment, each milestone and let the happiness sink in only a little, then pack it away just in case. For over 8 months, that was our reality as I have so often spoken of before. Because despite the optimism, all of us chronic illness sufferers have that tiny bit of cynicism, a nasty little voice that whispers in your ear when your on the verge of something wonderful happening, a spiteful muttering spitting out such things as 'You can't possible get excited yet, you have lupus remember?' A voice bred from disappointments and missed opportunities this illness hands out.

But what a reward for our perseverance.

Nearly 7 months in I'm realising that the challenge is really just beginning. Pregnancy was the easy part! I have to keep well, manage my condition and raise a little girl who is beyond deserving of a healthy, energetic mother as well maintaining a sense of the person I was before and have a rewarding working life. How I am going to rise to this challenge?  It's a question that remains open for now and that my stubborn self is more than willing to seek answers from others for. 

You see, at the moment my life feels completely divided in two, one side I have my family, husband and the little girl we waited years for and I feel completely at peace, the other side I am weary with challenges that are constantly thrown in my path as a result of this illness, aside from the usual moans of being beyond tired, feeling like I've been hit by a bus and just plain sick of there always being something that hurts, the past few weeks have given me a fresh batch of cow manure to wade through. As always you can follow the trail back and the nasty voice says again 'if you didn't have lupus this wouldn't be a problem'.

What I can not reinforce enough is there is so much more to deal with having a chronic illness than just the limitations with your health, lupus is simply a catalyst that changes many elements of your life.  As much as the next sufferer, I resist the urge to be defeated and do not expect special treatment or circumstance, if anything we just want the same opportunities as a healthy person, but sometimes you just don't have the control, that's when it impacts your home, your family, your finances or your career.  Just when you think you've got one part cracked and things are going well, Bam! Your circumstances are forcibly changed again. How you respond and react is then scrutinised, creating an unfair pressure not to be negative, you're expected to just deal with it when we already have so much to deal with.  In a world where we view others personal battles on social media daily, our admiration of their endurance through difficult times, indirectly creates an expectation of optimism and bravery for ALL those facing challenges with their health or personal life,  the resulting necessity to try and find a positive resolution is exhausting. Embrace the freedom and choice a healthy body gives you, for not having this, is what I find so hard to accept.

So here I find myself, a mother, a lupus sufferer, a kidney patient, a retail worker, a wife, a sister, a daughter, a friend, an optimistic pessimist and a seeker of fairness, committed to this never-ending game of taking one step forward and two steps back, because the last foot forward gave us our funny, clever, gorgeous little girl.  I have found the past few months and weeks warmly rewarding, joyously happy, grudgingly infuriating and cupboard kicking, toe stubbingly frustrating and at the end of it,
a decision made for my daughter and for no one else, for how can I be a well, happy mummy otherwise. 

My own mother told me being a Mum is the hardest job in the world, and not until recent weeks have I realised how true this statement is, yet we constantly put pressure on ourselves to do more, do better and prove to everyone we can do everything, when perhaps by having our babies, we are already doing every
thing, and have everything.  

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