A year ago today, our world certainly changed when Mia became a big sister to Jack. Obviously the first shock was despite being told at our 20 week scan they were “98% sure but only because we aren’t allowed to say 100% baby is a girl”, it turns out we weren’t meant to have an Alice but a very cheeky boy called Jack. For the first 36 hours we were blissfully unaware of what was ahead and whilst we bundled him up in a pink blanket we thought we would laugh about how Jack was supposed to be Alice and live off that story forever.
But in a short 36 hours he went from our funny boy to our little superhero. At just two days old things all changed and he had his first emergency operation, two months later he would have a second for a completely unrelated condition, because when it comes to superheroes he’s been pretty unlucky. In one tiny year he has had two major ops, 4 hospital stays and 100s of visits to hospitals, doctors, physios and done it most of the time with a smile. We are so incredibly proud, even at a year old you are often braver than adults, rarely crying at blood tests and opening your mouth ready for all the medicines we give you every morning and evening (and sometimes lunchtimes too). CF and Alpha 1 liver disease are something I knew so little about and now feel I know too much some days, but I hope in your lifetime CF will stand for Cure Found not Cystic Fibrosis.
But on the positive side because of you we have met some truly amazing people. Particularly his CF team (Dr Chin, Dr Pao, Dr Brown, Dr Chaudry, Sarah, Cath, Jacqui, Mike, Serena, the whole physio team), his surgeons who saved his life, all the parents on the CF groups who’ve helped me find out so much more. A special mum whose name I won’t mention who happens to have CF and is a HUGE inspiration (and her own mummy who is a superlady!), Frankie’s mummy whose seen what Alpha 1 and CF can throw at you and got through it. But most of all my AMAZING family and friends, who stopped me, Ian and Mia going insane. (Although work keeps me really sane, how lucky am I to have the BEST job in the world, that it seems like my reward most days!)
But today is your birthday and today (after the medicines and physio) it’s just about being normal. Your big sister is so excited for you, even if you don’t know what’s going on and mummy, as usual, will spend the day smothering you with kisses and feeling grateful that I get to do so, and daddy will do lots of singing dancing and tickling (as usual). Happy Birthday my beautiful boy… smothered in kisses
