The Lodger and Us

I texted my husband today to let him know that today is my least favourite day of the year. He reminded me that I said the same thing last year, so it must be true. I used to love Pancake Tuesday as a child. The excitement of having pancakes, a rare occurrence,  a special treat. I remember going back into school the next day and everyone sharing the number of pancakes they ate. I remember being introduced to vanilla ice-cream on pancakes by close family friends. A game-changer. Delicious.  Pancakes were joyful. Pancakes were something to look forward to.  Notice the use of past tense, Pancake Tuesday is now a day I'd happily skip!  As an aside, we can have pancakes on other random days throughout the year and it's a no stress event but this day, the Tuesday of the pancakes is a day that I could happily scratch off the calendar for eternity!  Pancake Tuesday is very different in our home because of Prader Willi Syndrome. The Lodger become...

Hello Dermot, I'll be honest upfront. I wouldn't say I'm not a fan, I'd just say I wasn't really aware of who you are.  Today I dropped my son off at school and as I drove away I switched on the radio. The odd thing was it wasn't the station I usually listen to as a I drive away from the school. One of your songs just happened to be playing. "But better days are comin' Better days are comin' for you" And I stopped and I started listening. Stopped as in stopped thinking thoughts, not stopped the car. It's school drop off, you don't stop the car.  The song continued... "The rain it ain't permanent And soon, we'll be dancing in the sun" Let me explain. Today wasn't just an ordinary school day. It was the 'I'll give it another go" swim day! My son has a rare condition called Prader Willi Syndrome. For him, part of having PWS is living with anxiety. Anxiety is a constant feature in everything he does daily....

It must be such a comforting experience to be able to send a child to school and not have to worry about how they’re getting on. I feel guilty just writing that sentence. Parenting a kid with special needs does that.. guilt.  It must be a comforting experience not having to keep your phone near you incase the school ring and hoping they won’t ring but when your phone does ring you’re relieved when it’s not the school but your heart skips a beat when it is.  Then you answer the phone with your heart racing and you’re told what’s happened... and as you end the call your eyes are tear-filled, as even though you said you’d be strong, it rarely happens. And then you feel guilty because whatever you’re feeling, you know your child is feeling worse.  It must be comforting to go to pick up and not have to be prepared that your kid had a hard day, that when you open the communication copy, you make a wish to read a positive account of the day and not a day with incide...

I knew it was coming. I was prepared for the ocean of calmness we were in to come crashing down with the giant wave of a PWS moment.  Did I expect it that Monday? Not one bit. In all honesty, I’m not sure I ever expect it and my heart skips a beat when I get ‘the call’. Flight or fight mode kicks in. For me, it’s flight mode. I’ll take The Lodger home, wait until the PWS moment has passed, and we’ll talk things through quietly and calmly. Just once. We don’t dwell on it. A consequence is put in place and we move on.  We’re not used to meltdowns at home. So when they happen out in the world, I feel completely out of my depth.  I’m unpractised at this. I feel like a rookie. I try to remember everything I’ve read on how to handle a meltdown. Keep a calm voice tone, use positive language, don’t use too many words, don’t interrogate at the moment and keep breathing.  All easier said than done.  I read a book a while ago and I’ve rerea...

I'm about to write a sentence that I never thought I'd write without feeling a pang of sadness. The Lodger is extremely excited for Christmas (that's not the sentence, I'll let you know when I write it.) He, as usual, has it all planned out in his mind with the backup plan of "I know things can change.' The plan has a lot of detail but it's this line that makes me, of all things, smile. 'Mum, after we see what Santa has left. Oooo lego for me, hopefully. I'll go to the kitchen with Dad and help him make Christmas breakfast' There's the line.  Help him make Christmas breakfast. The Lodger is equally as excited for Santa as he is for Christmas breakfast.  Now, don't get me wrong, all breakfasts and meals are exciting in this house but when I've been talking to the Lodger about Christmas, his excitement for helping Dad make Christmas breakfast is joyful. I never thought I'd say that. This is The...

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 Lodger has learned the days of the week.  Brilliant.  Did you read that with an underlying sarcastic tone?  Honestly, it is fantastic that The Lodger has learned the days of the week, it's another milestone in the never-ending list of things society deems goals to achieve. However, because of this new skill, we can't be as direct with future plans. An answer with the day of the week before meant nothing but now it's a different story.  I accidentally answered his question of when Halloween is on with the day of the week. I'll blame it on being slighted distracted.  So, in the run-up to Wednesday, The Lodger did his new skill of saying what day it is and following it with the future days. This just sounds like an excited kid. Correct but also wrong because when you mix PWS in, you get excitement and anxiety.  The plan was put in place. Incase you think we sit up at night, with paper and pens and whatever else you ne...

If CPAP was Ironman, The Lodger would be the winner! That's the quote of the day. I think we better get it printed on a t-shirt.  The Lodger, Champion of CPAP 2018 For those without knowledge of Ironman, it's an endurance event that the better half took part in last weekend. This year was the Ironman 70.3, a 1.9km swim, 90km cycle and a half marathon, all to be completed within a time limit. The Lodger and I were the Ironman Support Crew. In the Lodgers words, our job was to 'Cheer on Dad and see his medal at the end!'. Two boxes ticked and to quote The Lodger " Well done Dad!" Ironman Success We had many celebrations this summer. A New house, a family wedding, birthdays, triathlons, Ironman... but in the world of living with PWS, we have some PWS celebrations too. Obviously, being a champion of CPAP (For those without knowledge of CPAP click here ) is now close to the top of the list, possibly even knocking down the Ironman medal f...