I recently had an operation that has required some time
recuperating. My daughter's response was to bake me a cake. She
lives some hours away from us in a house which is fully staffed 1:1. She's the
only one in "her" house and she absolutely loves her new life.
Many people think she is very lucky, but luck had nothing at all to do with it.
Sadly she was not able to curb her behaviours to allow harmonious living
with others and she had to go through some very tough times because of it.
So...the cake was duly delivered and later that night as I lay in bed thinking, it occurred to me how much she has grown and developed over the past couple of years. She's now 28 and her move into this new home has been a revelation - to her, and to us. For the first time in quite a while, she is happy. She is losing weight, has a couple of small part-time jobs (supported) and the new care-provider agency seems to 'get' what PW is all about. Why else, I asked myself, would they have let her bake a cake?
Whenever she wanted to bake when she lived at home, I would inwardly cringe. My thought was that if I 'gave her an inch, she would take a mile' and I didn't have the energy to cope with that, so baking was something she longed to do while I longed for any excuse for it not to happen. I knew I was denying her the one thing in the world she wanted to really do - cook!
Once, for a 'significant' birthday she saved up her money to buy me a cake which she had got decorated in bold letters "Happy Birthday Mum" in lurid blue icing. She didn't ask for a piece of that cake, and neither did she ask for a piece of her latest cake. Her great joy was in choosing what she wanted to bake, cooking it, and giving it away, although on any given day of the week otherwise, she is one of the most opportunistic "acquirers" of food I have ever known. And the most ingenious. But when she's cooking from the heart (an expression bandied around on every cooking show these days) she has this spirit of generosity and nurturing that you seldom see elsewhere. Except, I think, in PWS.
So many of our guys with PW have this wonderful spirit of generosity. It's odd, when you think that the chief characteristic of PWS is always said to be this unrelenting desire to eat - yet, sharing food is something they genuinely love to do. Francie has done it since she was very little. It's one of the most disarming traits of the syndrome.
And yes, this latest cake was very nice with a layer of yummy dates at the bottom. She made it from a packet, but included the dates as she thought I might like it better. And, I did.
So...the cake was duly delivered and later that night as I lay in bed thinking, it occurred to me how much she has grown and developed over the past couple of years. She's now 28 and her move into this new home has been a revelation - to her, and to us. For the first time in quite a while, she is happy. She is losing weight, has a couple of small part-time jobs (supported) and the new care-provider agency seems to 'get' what PW is all about. Why else, I asked myself, would they have let her bake a cake?
Whenever she wanted to bake when she lived at home, I would inwardly cringe. My thought was that if I 'gave her an inch, she would take a mile' and I didn't have the energy to cope with that, so baking was something she longed to do while I longed for any excuse for it not to happen. I knew I was denying her the one thing in the world she wanted to really do - cook!
Once, for a 'significant' birthday she saved up her money to buy me a cake which she had got decorated in bold letters "Happy Birthday Mum" in lurid blue icing. She didn't ask for a piece of that cake, and neither did she ask for a piece of her latest cake. Her great joy was in choosing what she wanted to bake, cooking it, and giving it away, although on any given day of the week otherwise, she is one of the most opportunistic "acquirers" of food I have ever known. And the most ingenious. But when she's cooking from the heart (an expression bandied around on every cooking show these days) she has this spirit of generosity and nurturing that you seldom see elsewhere. Except, I think, in PWS.
So many of our guys with PW have this wonderful spirit of generosity. It's odd, when you think that the chief characteristic of PWS is always said to be this unrelenting desire to eat - yet, sharing food is something they genuinely love to do. Francie has done it since she was very little. It's one of the most disarming traits of the syndrome.
And yes, this latest cake was very nice with a layer of yummy dates at the bottom. She made it from a packet, but included the dates as she thought I might like it better. And, I did.
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