When we were young and beautiful (kind of) my husband and I acquired a site in the city where we lived. We then embarked on an 18-month collaborative adventure with a team of architects, engineers and builders with the aim of creating the house that would become our home. Shortly after becoming pregnant with my first child (who was later diagnosed with PWS), my husband and I moved into this new house.
As is the norm where we live, the kitchen was central to the design and intended as the primary communal living space. Just as the kitchen was designed to be central to the house, food was envisaged as central to the kitchen. So, a large open larder along one wall was intended to provide both easy access to food and a means of displaying food.
Obviously, we would planned our home differently had we known that our son was going to be born with PWS!
For nearly 10 years since our son's birth we have (largely unquestioningly) accepted the vision that inspired the original design. The kitchen is occupied more than any other room. We have used the open larder for food storage. We have left a bowl of fruit permanently on the windowsill. We have entered the house through the back door, which leads into the kitchen. While we have had to exercise some caution (e.g. we don't leave our son in the kitchen on his own) we have largely used the house as we would have had our son not received a diagnosis of PWS.
Over the recent holidays I finally began to change things by removing all food from the kitchen. Where did I put it? Fortunately, the architects had included a small utility room near to the kitchen. Designed to hold ugly but useful items it has become our new food storage area. It's isn't large enough to accommodate the fridge and isn't ideal for other reasons, but it works reasonably well.
The open larder and erstwhile food storage spaces in the kitchen are also more than capable of accommodating what has been taken from the utility room. So there are hammers and screwdrivers in place of cereal, and weighing scales and a first aid kit in the place of tinned food. It looks ugly, and probably bears no resemblance to what the architect had in mind, but it works better for us.
Did I enjoy reorganising my kitchen? Not particularly, it just felt like another chore. However, in the course of my morning's work I reached two conclusions:
- My family has been far too willing to conform to existing norms and infrastructures that clearly don't suit our lives. Just as the cultural norm of a food-filled kitchen acting as the focal point of a home does not have to be endured, there are also many other norms and practices that we can and probably should resist.
- I have completely accepted PWS. I don't resent having to have a kitchen with no food in it. I don't resent the fact that my life is (in many ways) different to the life I dreamed of as I planned my house. I don't feel sorry for my son, my other family members or myself because of his diagnosis. Our life is different to what we expected and PWS is one big reason why, but that's fine.
Incidentally, around the time of my kitchen reorganisation I explained the concept of New Year's Resolutions to my son. When he appeared not to understand my initial explanation I asked him if there was anything he didn't like about his life in 2013 that he would like to change in 2014. He was very clear that he didn't want to change anything. While this could be interpreted as an absence of creative thinking on his part, or an unhealthy obsession with sameness and routine, personally I choose to interpret it as a sign that he's happy with his life too!
Happy New Year!