The Lodger and Us

When things are quiet, we don't tend to write. There's the odd update on The Lodger and Us instagram but there hasn't been a blog post in a long while. I'm happy to report that things are quiet at the moment. Quiet means all is calm and well in the world of The Lodger. When we're in this moment, I'm always half on edge waiting for a curveball but in our almost 13 years of the PWS world, you in a way get used to the quiet times, while waiting for that  inevitable PWS unexpected but expected twist.  The Lodger is watching his Friday movie, had the best yoghurt he has ever tasted (Plain and Greek if you were wondering, and yes he has had it many times before) and is looking forward to the weekend of not a lot planned.  When I say all is quiet, it's our quiet, our unique normality of quiet that unless you're in the PWS world you probably wouldn't describe as quiet.  Our kitchen remains locked. Our routine is our routine. Food happens at food o'clock....

It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome.   To save you doing the maths: twelve years and almost 2 months ago.  We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day….  We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios.  We talk with many  PWS families- both with children older and younger than our boy, The Lodger.  I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’  Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs h...

Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to.  The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed.  We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one.  However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned.  The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...

By Rory The Lodger loves cows. They are his favourite animal. They are also his baby brothers favourite animal because the Lodger decided they are.  Cow watching! The Lodgers birthday was recently. A huge day in his and our life. 10 years into our journey of discovery and all the other things Prader-Willi Syndrome throws at you. He wanted the perfect birthday. Don't we all on our birthday. Unfortunately the Lodgers idea of the perfect day for our birthdays doesn't always live up to his high standards. Or what you'd actually like to do on your birthday. And this can lead to unhappiness with the plan.  Things have to happen certain ways. And sometimes for example if I had a glass of orange juice for my last birthday breakfast I obviously have to have one this year. And probably, every year. Routine is important. We created that monster ourselves. This year my birthday was surrounded by much sobbing and stress as when the cake didn't work first time (and I was OK with it, ...

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...

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....

Dear Angelica,  You don’t know me. You don’t know my son but we talk about you every day.  Every single day. Last Friday I felt initial relief when I passed your old school, Kylemore Abbey, that I didn’t have to talk about you.  We always talk about your school days there. We've often visited and every time we see it we talk about you, we talk about everything about you.  You see, my son has something called Prader Willi Syndrome. Amongst the host of symptoms are obsessive compulsive behaviours. One of his obsessions is you! Facetiming Angelica!  It all started with your role in The Witches (apologies Ms.Hathaway while we enjoyed your portrayal, nothing will top the one and only Angelica Huston). He decided The Grand High Witch was real. It was a true story. And sometimes the Grand High Witch would visit him. He would say that Grand High Witch was in school. He knew she was real. He was convinced. We were almost convinced. He has a wonderful imagination, he i...

The Lodger loves designing and gifting cards.  "Mum, I made a card for Z today!" "Fantastic. What did she say?" "She said you made my day and in my head I thought, that's a phrase because you can't make a day!" The Lodger is 8 During the summer,  The Lodger turned 8. I know, 8, can you believe it.  We put a call out for birthday cards and he had a fantastic time gathering them in the birthday treasure hunt.  One by one they were opened and he quizzed us on who everyone was.  "Mum, who's this person?" "O remember, the last PWSAI family weekend and at our table there was...."  "The last family weekend" said The Lodger The Lodgers face fell. I continued to explain "Yes, the last family weekend..." "Mum, why would you tell me this on my birthday! I can't believe it, the last family weekend" As I continued to explain and he was getting further and further upset, Rory was trying to explain to me. ...

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...

2563 days, give or take a leap year, is the amount of days since The Lodger was diagnosed with Prader Willi Syndrome.  It's been quiet on our blog (apologies) but it has definitely not been quiet in our lives. Update the blog has been on the to do list since May but sometimes things get in the way and sitting down to write a blog post does happen but it just doesn't get finished but we're back now!  The Lodger at his 7th Birthday party The Lodger recently turned seven years old. I can't believe it either. I always find during this time of year that I look back to those first couple of weeks of The Lodger and compare him to where he is now. Just the other day, he told me he was bored playing, the joys of summer holidays, so I asked him did he want a job. 'Yes I do' he replied. 'Ok, how about hoovering the house?' I asked him, fully expecting to hear a negative response but much to my surprise he said yes.  Did I ever think that tiny baby...