The Lodger and Us

This day ten years ago we received a diagnosis of Prader Willi Syndrome for our baby who was just two weeks old at the time.  It was a day spent in the depths of grief.  Googling PWS but not wanting to actually see what this PWS thing was. Googling words like hyperphagia, scoliosis, sleep apneoa. Reading the long list of symptoms. Telling close family that we had an answer but needing to get our heads around it first. Typing in PWS Ireland but being too scared to actually click any links. Heart breaking sadness. Hugging The Lodger and promising him we'd make sure he would have an incredible life. I spent the day crying, holding my tiny baby and not really wanting to talk to anyone.  This boy is on fire! ;) This is how we spent our day ten years on!  7.30am - Get up, Get dressed. I haven't heard any sound from The Lodgers bedroom so I think he must be having one of his lie ons. I was wrong! When I open his door, there he is dressed and with a huge smile on his fa...

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things.  Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way.  He then stopped and said “What is Pancake Tuesday?” A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger.  "Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is P...

It's 3am. It's beeping again. It might stop. It doesn't. How many times is this? Only 4. A good night so far. I head stumbling for the Lodgers room. He's asleep, oblivious to the constant monotonous beeping. I fix the strap back on his face and the beeping stops. For now. Time for a quick snooze before the next one. So far a below average night from the average 7/8 trips across the landing and the World Record of eleven but that was in the midst of a head cold so I'll allow him that. Him and his bloody beeping mask . But yet I am no more tired than I was before the Lodger, before his mask, before PWS. I'm trained. Self-trained, and for the most part self-taught, in the adventures of Prader Willi Syndrome. The beeping rules are simple. Beeping mask when we're awake not my problem. Beeping mask when we're asleep, very much my area. I don't know how we got to this agreement but it works. Possibly wifey enjoys the sound of consistent be...

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 Lodger has many people in his life who love him, care for him and support him. We are very fortunate to have a wonderful network of family and friends who without question got on board with our PWS rulebook. The Lodger has a team of superheroes who work with him in areas such as speech and language, occupational therapy, physiotherapy and not forgetting his teachers and preschool assistant in Playschool.  The Lodger at his most recent checkup was in the recommended zones for height and weight and his blood work came back perfect. This was great news to hear, as we are constantly stressing over 'Is he eating too much?', 'Is he eating enough?', 'Is he getting enough vitamins and nutrients?', 'Is he healthy?' We, as parents, are constantly thinking about his meals and snacks, planning ahead for changes in routine and ensuring that he is eating a very healthy diet. The Lodger is never given extra, never given food from someones else plat...

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...

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...

May is Prader-Willi Syndrome Awareness month. I could tell you all about the complexities of PWS. I could tell you all the symptoms. I could tell you about the medical interventions required. I could tell you about the therapies. I could tell you how the diagnosis changes you as a person. I could focus on the negative side of things.... but I won't. Instead, I'll share with you the joyous moments. The milestones we waited for. The feeling of pride we have when The Lodger achieves something we never thought he would. Just for one minute, think about your muscles that we mostly just take for granted. Think of the muscles you need to stand up from sitting. The strength you need in your core to stand tall. Think of the muscles you need to hold a book or to lift your arm over your head!  The Lodger has low muscle tone. This means that everyday tasks we take for granted are an extra challenge for him. At birth, The Lodger could only move his eyes. It's been an incred...