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 hungry...
'I'm hungry!' he said, as he rubbed his tummy.
Granted we were on the longest car journey and we were also feeling the unspoken word, as we road tripped through Canada on our holiday last summer. Ironically, a holiday we took to attend the International PWS Conference.
'I'm hungry!' he declared again, as I think we were both in shock/sadness/disbelief when he said it the first time.
Our hearts sank and broke a little bit more.
Food for The Lodger isn't just something you eat, it's goes much deeper than that. It's a constant preoccupation for him. It's his last thought going to sleep at night and even at just four years old, it's how he schedules his day.. breakfast, play, sleep, snack, play, lunch, play, sleep, snack, play, walk, dinner, play, books, bed..
Today is Blue Monday and the Lodger must have been feeling the effect of it, as he had a bad day in playschool today. Sometimes we can easily pinpoint what went wrong, a change in routine or tiredness but he's left myself, his preschool assistant (PSA) and playschool teachers guessing today.
And the unfortunate thing about todays upset in playschool, was it happened just before lunch time. We are very lucky, make that extremely fortunate that The Lodges PSA and Teachers knows the rules, no reward or punishment with food and so it was, that we found ourselves in a tricky situation...
Let him have lunch = reward
Don't let him have lunch = punishment
There's no thin line here.
In the end, I collected The Lodger and brought him home sobbing, he had his lunch at home but he wasn't allowed to go to his grandmothers house.
And that's why I hate food!
It's always there. Try as we might to keep him safe and distracted, food is always there. It's never going to go away, it's never going to be something he doesn't think about, it's constant. As much as were tried to protect him from the word hungry, he learned it and uses it. As much as we try to make our home safe and our lifestyle reliable because believe me, without fail our day is scheduled around breakfast, snack, lunch, snack and dinner, The Lodger constantly needs reassurance.
Every night, before he goes to sleep and after we have said I love you, he says ‘See you for breakfast!’.
And that's why I hate food.
It isn't something my four year old son should have to worry about.
Though I do have a sneaky feeling, The Lodger might be getting sick, unfortunately there's no thermometer to measure this, its just intuition. He's never had a high temperature, even when he's been very ill. He rarely shows any typical signs of illness. We have our own telltale signs; challenging behaviour and increased food obsession.
Or it could have just been Blue Monday.
We will hit restart and the trials and tribulations of todays day won't be spoken about. It's in the past and can stay there. Tomorrow is a new day.
|Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst|