The Lodger and Us

It’s the night before Easter and all through the house, not a creature is stirring.... Oops wrong event!  It’s Easter Eve and the Lodger has been busy over the last few days questioning all things Easter Bunny, most questions relating to whether the Easter Bunny knows about his special tummy. 'Mum have you told the Easter Bunny about my special tummy?' 'Mum, how did you tell him?' 'Mum, was it a letter? I didn't see you post it." 'Mum, what about you? You don't have a special tummy. Will you get a chocolate egg?' 'Mum, what is a chocolate egg?' 'Mum, I think the Easter Bunny DEFINITELY knows about my special tummy!' 'Mum, I think I really like Easter. Mum, the Easter Bunny will bring me special things." 'Mum, does he know I live here now and not in the old house.' 'Mum, what about our new house. Will he know where that is?' 'Mum, we don't live in the new house yet. D...

It is one of the most heartbreaking things to see your child struggling.  The Lodger is sick.... again.  Since starting school, he seems to be catching every bug going. Last October in the midst of Storm Ophelia, The Lodger vomited for the first time.  For those not in the know, people with PWS rarely vomit. It can be a sign of serious illness.  He showed no sign of illness beforehand. In fact, we were out for a walk when it happened. His version of the story is very to the point... "We were walking and then I stopped, my mouth opened and the sick came out!" Straight afterwards, he asked for his snack but a frantic call to his PWS nurse, as I sought to find out how I'd know if his stomach was rupturing, emphasised the point to him that he'd have to wait a little while for his snack.  The Lodger has 100% respect for what his PWS Nurses and Doctors say. And as an aside, I didn't tell The Lodger that I thought his stomach was rupturing. I rem...

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...

"Gabh mo leithsc é al... Gabh mo leithsc é al.... Gabh mo leithsc é al....." I drove along perplexed.  99.9% of the time I understand The Lodger but there's always that 0.1% that will leave me completely at a loss. I'll ask him questions to see if I can figure it out and most of the time it works but not this time.  Due to PWS, The Lodger's speech is delayed. He can say all the words in the world now but he misses the last syllable of most words and some sounds are still difficult for him but he's working on it. This means that to the untrained and unfocused ear, some words sound alike. Just the other day he announced at breakfast "Mum, I'll help you" and I said, "Fantastic, superstar!" . His father and Auntie looked on aghast until they realised he said help, not hate! And just like everything in the world of The Lodger, practise and patience will get him there. However this particular time, on the drive in ...

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...

2018 is the year of adventure for our family.  That’s how we’re selling it to The Lodger. Pirates have adventures. Pirates can do no wrong in the world of the Lodger. Adventures are a good thing.  Over the last few months, he’s watched as   the estate agent visited to have a look around the house. Why Mum? He’s watched as the man in the van put up a big sign in the garden. Why Mum? He’s watched as we manically cleaned the house before viewings. Why Mum? He’s watched as we started packing things into boxes. Why Mum? He’s watched as the boxes started to fill up the rooms and his toys started to disappear. Why Mum? Today, the Lodger entered the house for the last time today to see all our belongings gone.  He walked into the sitting room.  “ The couch is gone. The Christmas tree is gone. “ He walked into the dining room.. “Everything is gone.” He walked into the kitchen... “ Mum, o no. The kitchen...

This is our sixth Christmas. Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome. If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food? And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed. What we didn't know was how incredible our son would be. Today The Lodger got his Christmas holidays ( break !). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel.  How did he handle it all? Without a hicc...