Our story is one of hope, of looking forward, of slapping away the crappy hand we’ve been dealt and being positive: after all I’ve got the most perfect HEALTHY child so what’s not to be happy about?
I don’t have any guilt about giving Pinkie C.F - we didn’t know. I’m not sure if it helps that we gave it to her together rather than one parent stitching her up. There’s never been any blame pointed at anyone, the same genes that gave her ringlets and blue eyes also gave her C.F, it’s just the way she’s made. I’m just thankful that we didn’t know before she was born, during the time we could have stopped the pregnancy. Look what we would have missed - that scares me more than anything. I do think that if we had been forewarned and had hit Google to do our research, we would have thought it cruel to bring a poorly sick note into this world. To this day I don’t Google C.F - I’m on a need to know basis and that has served me well these past eight years.
When we finally left the hospital after Pinkie was born, diagnosed, fitted with a poo bag and broken my heart I was a complete wreck. I wasn’t taking phone calls from anyone except my three year old son and I couldn’t get a grip. My husband, my hero, my rock made the decision that we keep Pinkie’s diagnosis a secret within our family and close friends only, because I was on the very edge of not coping.
Pinkie didn’t sleep well, that’s not because of the C.F, that’s because she has always been livelier than a bag of frogs full of E numbers. She has a zest for life and is either on or off. She’s the same today. There is no gentle waking up, eyes rubbing and yawning. As those beautiful eyes open she is ready for the day. I was told that when a child has a defective gene, their body does all it can to counteract that gene, gives them an extra dose of fizz to get them through tough times. I like that. I like to think that Pinkie has a bit of sherbet and pixie dust in her blood.