The Lodger and Us

Hopefully is our word of the moment. Every time we plan something, I follow it up with 'but plans can change, hopefully, it will be plan A but sometimes we have to move to a different plan'.  It's become so ingrained in our everyday life now that I don't really even take notice.  The Lodger for his first five years had a very convenient bus/train network at our old house. Granted, things could run late but they were plentiful and always had space for everyone. Last weekend, the Sunday plan was to get the Galway bus into Galway city to meet Dad after work.  Hopefully, the bus will come.  Hopefully, there'll be space for us on the bus. Mum and Dad have a plan B, incase.  Hopefully, the bus will come.  Mum, why are we saying hopefully? Ok Mum, hopefully.  As I stood with The Lodger, at the spot where I thought the bus would stop but couldn't fully confirm it with The Lodger who expected a bus stop sign, I had an inkling of what it was...

The summer break is going fast. It's not summer holidays , as in The Lodgers world a holiday is where you pack a suitcase and go somewhere, so it's summer break in this house.  Infact, it's summer break in the new house, our new home.  So realistically, lots of suitcases were packed and boxes.... so many boxes.  But we are here, having made the huge decision to move across the country, we are slowly unpacking boxes as we settle into our new home. We have been full-time residents in the west of Ireland for a little over a month now. It's been busy, hence the lack of updates on The Lodger and Us. Usually, when we go quiet, we are facing a challenge and you might be expecting me to write about the challenges the Lodger has faced with the epic change that is moving house. I can, hand on heart, declare that The Lodger has settled into his new home without a hiccup. He spends his time walking around telling us how much he loves this house, our new house. He's happy. ...

A few years ago we went to a Living Better with PWS workshop. I still take out my covered in scribbled notes guide from the workshop as it is full of hints, advice and information from other parents of kids with PWS. Our mentors! There is nobody who understands PWS better than other parents. Granted, their child might have different symptoms or the same symptoms with varying degrees of severity, different strategies for dealing with the array of challenges but from each parent I have met, I have gained knowledge. (Thank you!) As the Lodger has gotten older and new challenges arrive, the guide has proven invaluable. My old reliable car has proven not so reliable and has reached the end of it's days. Not bad for '98 vehicle. This, for The Lodger, could have been traumatic, except for the fact I had planted the seed a few months ago. We were driving home one day and we got on to the subject of old things and how sometimes we need to replace ...

Once we heard that The Lodger had Prader Willi Syndrome, we very quickly and drastically changed our lifestyle and one of the hobbies I once enjoyed, I felt I could never do again. I loved baking. I was a big fan of cupcake design and when I was pregnant I looked forward to baking for future birthday parties for my child. On hearing The Lodger has Prader-Willi Syndrome, I packed up all the baking books and put them away. How could I bake, when my little boy would never get to enjoy the creations or lick the bowl which myself and my sisters enjoyed so much as we grew up.  I was very hesitant about introducing baking to The Lodger. I was thinking about it all morning before I made the final decision, weighing up the good and bad. Would it be a disaster? Would it increase his anxiety? Would he able to resist having a taste? When he's older, will it cause stress?  I got everything ready, the bowls, the aprons, the weighing scales, the ingredients and the spoons......

The first year after The Lodgers diagnosis every week there seemed to be something new that we would have to get our heads around as parents of somebody with Prader-Willi Syndrome (PWS).  All we could see was FOOD!! At birthdays there's cake. At Halloween there's trick or treating. At Christmas there's too much. At weddings there's food. At Easter there's chocolate. At family and friends get togethers there's food. Walking down the street, there's food! And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on! In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate...