The Lodger and Us

We walk out of the shop. I ask the Lodger for his hand but he refuses. I explain, as you do, the dangers of traffic and that he must hold Mummy or Daddy's hand when near the road. He's frustrated and tries to explain to me what's wrong. But I just don't get it.  Then the Mummy steps in to understand the problem.  The Lodger explains using his range of words and signs that obviously he cannot hold Daddy's hand as he is carrying a pig. Yes, a rather large invisible pig. So the situation is resolved by Mummy taking the pig and the Lodger holds Daddy's hand and is happy. He keeps checking behind us as we walk and after some questioning I'm informed that he's just making sure the other pig is following. Apparently we have 2 pigs. We hop in the car, close the doors but Mummy has forgotten to let the pig in. The door is opened, the pig is let in, d isaster averted.  We're good to go, the Lodger and pigs on board. Watching My Pe...

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...

Since deciding (or having it decided for me) to change my area of life study to everything relating to Prader-Willi Syndrome a few years ago I kind of wonder what I used to fill my brain with. Thanks to The Lodger, one of our new very mild super powers (and there are a few) as credited to the D.O.D. (David O'Doherty) is our ability to circumnavigate hospitals.  We don't need to follow signs or ask at the desk - you can almost sense where you need to go. Obviously this super power is totally magic and nothing to do with the over familiarisation of hospital and health facilities that the world of The Lodger has brought us to. Pre-investing in The Lodger, it's not that I ever thought about exposing my super power, it's just that I never thought about it. Or that it was even there. Possibly ignorant to a whole world within our world that we just managed to avoid. But now we're in and it'll take more than a blindfold to keep me out of an endocr...

The Lodger has started his journey into the land of education! Unfortunately due to cut backs, The Lodger was unable to receive an assistant. We were very fortunate to find a preschool that would take him to see how he would get on. The first day of school was the most nerve wrecking day and not just for me. The Lodgers support network were all equally nervous as he took the big step into education.  I reluctantly dropped him over to preschool, helped him hang up his jacket and put his lunch bag away. I helped him walk to the table, sat him on the chair, fought back the tears and told him to have a great day. Before leaving, I emphasised to the teachers, that I was 5 minutes away, to ring me at any stage and then I left. I got home and spent the next 2 hours 45 minutes anxiously waiting for a call. I won't lie... I didn't clean the house. I didn't read a book. I didn't watch tv. I didn't do anything. I just sat on the couch, nervously waiting, c...

The Lodger started preschool in the last few weeks. We found a preschool that have accepted him without a preschool assistant, a battle we continue to fight, trident in hand we fight on. Anyway all he needed was a thermos lunch bag. So simple and yet these were the thoughts going through my head a few days before he set off. I discuss with the Lodger where we should shop for his lunch bag and because it's a Wednesday and because it's just after lunch he's in a YES mood so my decisions are all agreeable. This is a good day. We arrive in the shop and I survey the options. He loves Frozen but I don't so I veto that. He understands. Daddies know best. He loves monsters too but it's all monsters crossed with lunches, so monsters eating and I'm not sure about how Pradar-Willi friendly that is. Then there's the happy strawberry bag with the lovely strawberry zips but I wonder if I buy that one will his teachers believe how serious PWS is if we're so c...

The Lodger has had a summer filled of Champagne Moments. ( Thank you fellow PWS Mum for this phrase !) The IKEA Blue Chair This time last year, The Lodger started to weight bear. Since then, there has been daily physiotherapy and the motivation of Walter and the rest of The Muppets, the use of clever strategies to increase his confidence in using his legs rather  than crawling, weekly hydrotherapy to improve his strength, the removal and relocation of furniture to encourage him to take an extra step and a lot of praise and encouragement from us and family and friends to motivate him to walk an extra few steps everyday.  We were over the moon, thrilled to bits when The Lodger took his first solo steps in June  and with a lot of practice all summer, he can now walk independently! We have the Ikea blue chair to thank, as it acted like a walker he could push around the house. It scratched the floors but each scratch is a step taken, a reminder of the trem...

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...