Look how far

There is an occasion happening in our home tomorrow. Upon reflection, as anniversaries will have us do,  I realised I have not introduced us. I am Shelley. Amongst other things, I am mother to Kiah…the girl in many of my tales. She has red hair, a cheeky smile, a sharp mind and uncooperative body. She has a diagnosis of spastic quadriplegic cerebral palsy with pronounced dystonia and epilepsy. She is 11. Today she is 11. Tomorrow she will be 12!

Yes. T.W.E.L.V.E. Even as I simply write that number tears well in my eyes. The prospect feels overwhelming. It is such a tangled mixture of “Oh my…how did we get here so quickly?” , “Look how incredibly far she has come!” and “There have been too many times when I didn’t think 12 was even possible.”. The last ones sounds the hardest doesn’t it? But it is the formulation  and writing down of the second statement that has those tears spilling over. Look how far she has come. With that thought and on the eve of her birthday, here is a letter to my 12 year old Kiah.

My dear Kiah. Last week when I picked you up early from school you spotted me across the playground and beamed. That smiled warmed my heart and radiated to the tips of my fingers and toes. You probably don’t remember ( in fact I hope you don’t) but when you were born the thing I noticed most, after the red hair, was your furrowed brow. It stayed with you for such a long time. A frown and vacant eyes is a heart wrenching sight on a newborn…especially one I love so very much. I felt that you knew me, but it didn’t seem as though you always saw me. I understand now how much your brain must have been hurting and that it needed to reduce it’s injured, swollen state in it’s own time. But when your doctor said that vacant, staring look usually meant significant and permanent cognitive damage I was crushed. My hopes and dreams for my baby had already been tipped on their head with a prolonged hospital stay, many tests and then your diagnosis so this was another layer of pain…for us both. It seems that I have blinked and there I stood, at school cherishing the smile that was just for me.

You have come so very far my lovely. You have surpassed so many expectations and touched many lives. For you have powers that transcend your absent speech and uncooperative limbs. Super powers. You get under peoples skin and inspire them to be the best they can be. Especially me. I am privileged to be taught by you every day. The way you absorb and retain information astounds me. It is such a pleasure to see you enjoy school. You are a lovely friend. Your passion for listening to songs and reading books  makes my heart swell. That cheeky smile and wicked sense of humour remind me of your adored big brother. You are a determined, strong, forgiving, understanding, cheeky, smart, gorgeous girl…..or should I say young lady. Thank you for giving me reason to look for sunshine in the puddles. Happy 12th birthday beautiful girl. Love from Mum

{Read more over at her Facebook page…  What About Kiah    }


4 thoughts on “Look how far

  1. I wish kiah a happy birthday, and Martha would definitely agree with your comment about Kiahs cheeky smile! 😃. At age 5 Martha described kiah as having a cheeky smile and red hair! Xx

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