The Lodger and Us

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...

I hate food. Now don't get me wrong, I know food is vital for life and choosing a healthy diet is something myself and my husband have always done, long before Prader Willi Syndrome came into our life. Truthfully, we might have felt a lot less guilty when it came to having a  takeaway and treat food but we have always chosen to fuel our bodies healthily.  Then came PWS and we made our home a safe haven for our son right from the beginning, right from diagnosis day 1st August 2012. We cleared out the junk food, we put our rule book into play; No eating outside the kitchen, no free access to the kitchen, healthy food fills our fridge and cupboard... we've made our home as secure as we possibly can.  And for 4 years and 15 days we never mentioned the word 'Hungry' infront of The Lodger.  And then that day came. The day we never wanted to have. The day we wished wouldn't happen... as part of us has always hoped he'd be the one person with PWS not to feel hungr...

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......

Today started like most other Saturdays, we had our breakfast and we discussed the plan for the day. The Lodger likes to know what is happening but in the same breath he doesn't like when plans change. Through lessons learned over the past few months, we only tell The Lodger plans for the day that are definitely happening.  But today, today was a Saturday. The to-do list for the morning had been made. We put on our jackets, T he Lodger carried the shopping bags and I picked up the car seat. I went to open the front door and realised my keys were missing!  After a little bit of panic that The Lodger was oblivious to, I found the spare car key and we used the back door to leave the house. This was met with many questions about the status of the front door but we moved past it and The Lodger helped carry the bags, as we made our way to the car. To my horror, the key I thought was the spare key was not for this car. I assessed the situation....

It's so much more than eating. It's impossible to imagine the feeling towards food that a person with Prader-Willi Syndrome experiences.  But it's a very real thing. It's more than just hunger. It's a feeling that takes over the whole mind. Add the extra complications of stress, anxiety and uncertainty around the next meal and that's when you're getting close to imagining that feeling. The food obsession with PWS is so much more than eating. But as with all symptoms in Prader-Willi Syndrome this can be mild, severe or somewhere is the middle of the spectrum.  It's a relationship with food. It seems to be a consistently spinning wheel in the minds of someone with PWS where food is a consistent thought. The Lodger is becoming more and more obsessed with food everyday. But not in the way you'd think or we expected. His obsessions are far beyond his daily eating schedule.  A lot of his play now resolves around food. He makes te...