The Lodger and Us

Today I asked The Lodger to be quiet and to stop moving for one minute.  These are words I thought I'd never say to my child with Prader-Willi Syndrome.  He lasted about two seconds before he was off on a tangent while simultaneously moving every limb. He thought it was hilarious and I couldn't help but join him in laughing.  I had flashbacks to the tiny baby who could only moves his eyes when he was born, to the the little boy who worked so hard to reach every milestone and who now can talk and talk and talk..... and move! On a recent family day out, it was obvious to us his body was getting tired. Due to Prader-Willi Syndrome, The Lodger tires easily as he has low muscle tone. We'd brought the buggy along to give his legs a rest but any mention of sleep was out of the question. The Lodger has FOMO (fear of missing out!). He eventually agreed his legs were tired but he emphasised many times that he was not, so he sat in his buggy for short stints as ...

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable. But then there are those other times... It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the ' Will they remember to give me breakfast?' A consistent worry in the world of PWS. Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake  Walter  and pulling the covers back up on him. Imp...