The Lodger and Us

It's meant to be one of the best days of your life. It's meant to be full of joy and amazement. It's meant to be filled with well wishes and time stopping moments as you just marvel at how incredible your tiny baby is. It wasn't like that for us. Not at the start.  We had one carefree hour with The Lodger before everything turned horribly wrong and we were left feeling empty and confused, angry, guilty and sad. Terribly sad. The second time I met The Lodger  he was hooked up to wires, in a room with twenty incubators with tiny little babies all fighting their own battles. Beep.... beep... beep... beep beep beep. It didn't take us long to understand tubing, wires, machine sounds, hospital routines and hushed conversations. The frustration of trying to change a nappy with wires attached to his feet and chest. The feeling of inadequacy as you try to feed him 10mls of his bottle that he just won't take, as you manipulate his jaw to suck and wish you had...

49 seconds! 49 seconds!!! 49 seconds!!!!!! The Lodger stood unaided for 49 seconds yesterday!  In the world of most 2.5 year olds, this would not be big news but in The Lodgers world this is  'Hold the headline' news!!  We sneak physiotherapy into every activity, from practising standing in the back of Daddy's parked jeep to introducing new toys on a low table so he has to stand.  As tough as daily physiotherapy is, it certainly pays off!   Celebrate 49 seconds solo standing... we  are looking forward to 50!! 

The Lodger was diagnosed with Prader-Willi Syndrome when he was just two weeks old and like the majority of other parents with children with PWS, it was something we knew very little about.  We were warned to stay away from google, as a lot of the information is outdated but in a world that is reliant on the internet, we didn't last long. I read everything, the good and the bad. Luckily there are some fantastic PWS organisations around the world to get the right information from. We've had and continue to have great support from PWSAI  in Ireland and very easily accessible information from other PWS associations in the UK, USA, New Zealand and Canada. PWS is rare, so the worldwide community makes up an important part of our lives now. Facebook groups are great for advice from parents worldwide.  The Lodgers's interest in food is increasing. Other parents of non-PWS kids will often tell me their two year olds are the same but I don'...

I recently read a blog about what we can learn from people with Prader Willi syndrome and it got me thinking. I started to think about the good things of PWS. The benefits of PWS. The things that make me feel good about The Lodgers development. Possibly just my benefits of PWS but I thought I'd share them anyway. This may seem strange. How can you see benefits to a rare and so far incurable syndrome? Well I do and I'm sticking with it. So here's my Top 5 benefits of Prader Willi Syndrome . No 1. Slooooow motion The Lodger is 2 and he is growing so slowly. It's brilliant. He's been nearly walking for 6 months and he was nearly crawling for a year before that. Before that he was nearly rolling for ages. We never miss anything the lodger does as it takes him so long to do it. And I enjoy every day of that wait. The tiny changes. The growing confidence. The mental strength in his little face and he pulls up to peer out the window at the cat in t...