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...

By Rory Today we went hunting nuns. It a past-time I hadn't expected to be partaking in when I woke up this morning but that's what was decided we would do so we did it. I should explain.  The Lodger loves witches. His favourite witch is the Grand High Witch.  While some years ago we worked through the logic that the Grand High Witch was not real we discussed actors.  Now obviously, his favourite actor is Angelica Huston.  She lives in America so we learnt everything about her.  We learnt she went to school in Ireland  In Kylemore Abbey.  We now visit Kylemore Abbey. Alot. The Lodger likes the house which was then the school.  He likes the bus to see the Connemara ponies and the Kune Kune pigs. I like the gardens.  We now go there to hunt nuns.  Unfortunately today we didn't catch any nuns but we did do some research. We investigated every picture of the nuns. We read all about the nuns. We looked in odd places in case a nun might be the...

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...