everything looks different now..

I tried to find something that hadn’t changed, something that since Chiara’s diagnosis, still felt relatively the same. Yet I didn’t get far, truth is everything looks different now. That’s probably because everything is different.

I can’t look at a pregnant woman, or a new family, or a tiny weeny baby without seeing something so different. I’ve become so immersed in this special needs world now, that seeing families with neuro-typical children stands out more than ever. Almost like a glimpse into what life would have looked like.

The other day we had an appointment with our Paediatrician for Chiara at the same hospital where she was born. I sat in the waiting room amongst all the pregnant women, most who were first time mums. I watched as they sat there, with their bellies full of love and their eyes full of wonderment for the miracle that lay within.

Two years ago, I was one of those mum’s, who sat there waiting to get a check-up, waiting for that moment when the galloping sounds of the babies heart-beat would play through the doppler.  My heart over-flowing with joy, and deep curiosity about who grew inside. Was it a boy or a girl? What would they look like? Would they have their Papa’s eyes, or their Mama’s hair? What would be their mission in this life, would they have a family of their own one day? Would they love the outdoors? water-skiing, snow-skiing, riding bikes, climbing mountains, camping… so many family dreams, so much hope.

In hindsight, I am glad I didn’t know what fate had installed this early on when I was pregnant, I would have been too heart-broken to let myself dream about possibility. Instead, I too, was one of those mum’s just popping in for a pre-natal check-up, full of hope.

Soon our beautiful little girl arrived during April 2013,we were now a little family of four. Born with a right clubfoot, at 10 days old we commenced treatment that continued on for months. Unbeknownst to me during this time, my child was actually brain-injured. I had hunches and moments of immense worry, yet I always managed to shrug them off. Until the second diagnosis, ‘Microcephaly’, otherwise known as small head. Next was the brain MRI scan to investigate things further.

So many dreams, hopes and possibility came to a sudden halt. Parenting went from the norm, to spending most of our family time, either in waiting rooms, or various hospital departments who continued to deliver more devastating news. The third diagnosis was ‘Bilateral Perisylvian Polymicrogyria’ then finally ‘Quadriplegic Cerebral Palsy’. And just like that, in a flash everything looked so different. Chiara was only 5 months old, and had no hope of developing the ability to walk, talk, or potentially live a long life.

Things continued to look so different, I watched on as other Mum’s started to celebrate milestones, a wave of a hand, or blowing a kiss, or a first word, or learning to roll, then sit, crawling, self-feeding and those first magical steps to walking. It was as if someone had come into my life and pressed a giant pause button. I was stuck in a moment of time, without knowing if or when it would ever change.

=It felt so strange that life continued to move on, I almost expected it to stop, or slow down so I could catch up. Yet even when you cannot fathom how on earth life could possibly move on, it does. It continues to move forward and in the end, you have no choice but to flow with it.

Two years on, everything still looks so different. Yet as each day goes by, life confirms to me, that I was always meant to be…

the perfect Mother, to this special needs family.

4 Comments »

  1. My second son Marcus (with PMG) turns 11 this week. For many years I got that horrible feeling you describe every time I saw a family with two boys a couple of years apart. Those feelings come quite rarely now, so hang in there. I think it comes with acceptance, which hit me (I remember the moment very clearly) when Marcus was almost three 🙂

    • Thank you for your message – it’s always comforting to know I’m not alone in this journey. Even after a few years it’s still so very jolting.
      Acceptance – it’s a beautiful thing ❤️
      Much love to you and Marcus xx

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