Wriggles gets as much post as I do, if not more. Today yet another letter plopped through confirming we have been referred to ENT because of sleep apnoea. I am really glad about this referral (apart from a possibility of impending surgery) but there was one line which made my heart sink.
"I enclose a copy of my last clinic letter on this little girl. She really has a number of quite complex interconnected problems."
All I can think of when I look at her little shining face, is how can the simplicity of such a happy child be complex? Be so complicated? Warrant so much medical involvement? Cause so much worry?
I still struggle to accept our lot sometimes. Accept Wriggles, no question. And I know Wriggles comes hand in hand with her problems. But sometimes I still feel in a dream-like daze when I think of them and look at her. For want of a better word, she looks so normal.
Along the way, we have met so many wonderful children and brave parents who deal with so much more than we have. Their strength to get through and fight always impresses me and makes me feel often we are making a fuss about nothing. So it always comes as a surprise when paediatricians or similar refer to Wriggles as being complex or a medical pickle. Because y'know, she is pretty normal. Apart from the non-eating, tube feeding, vomiting, chesty, hospital-loving, appointments-riddled, non-walking, non-verbal thing.....oh.
God, I hate the word "normal".