I knew the question was coming. I could see it forming on the lips of the parent sitting across from me. She's holding her little girl of about one. I can sense it. She's about to ask 'What age is your little boy?'
There's a split second here where I hesitate. I can lie and say he's one. He's about the size of a one year old. He's sitting like a one year old. Crawling like a one year old. This will avoid the follow up look of surprise, the look of pity, the comments 'o he's small for his age' and the potential questions of why!
I sit and make up my mind. I tell her he's 26 months. I can quickly see her analyse him. She's probably not even aware she does it. I immediately follow it up with 'and your little girl?'
I keep the conversation going with the usual topics of parenthood - sleeping, outgrowing clothes, tiredness etc etc.,
Luckily the class starts before I'm quizzed further.
I don't hold back on spreading awareness. I'll tell anybody who wants to listen all about Prader-Willi Syndrome but sometimes, I just would like for him to just be himself- no labels attached.
He's just that lovely little kid, who always shares, loves to dance and sing, loves music, has a beautiful smile, an infectious laugh. I'd love for The Lodger in his music class to just be himself- not PWS.
I feel guilty for having the thought. I just sometimes like to be PWS free.
A day where I don't have to explain PWS and complexities of symptoms associated with it.
Just before his second birthday, we were at the garden centre andThe Lodger was happily sitting in the trolley, waving at everyone. He's very engaging- everyone always stops to give him attention. He made friends with a woman as we waited in the cash register line. They started playing peek-a-boo and I knew the inevitable question was coming- 'What age is he?'
'He's one' I replied. (not a lie 23 months is still age one)
'Isn't he just lovely' she replied, 'He's the sweetest child'.
I smiled and thanked her and as we walked away- he was smiling and waving- with a queue of people waving back.
It was a lovely moment. No PWS, just The Lodger.
There's a split second here where I hesitate. I can lie and say he's one. He's about the size of a one year old. He's sitting like a one year old. Crawling like a one year old. This will avoid the follow up look of surprise, the look of pity, the comments 'o he's small for his age' and the potential questions of why!
I sit and make up my mind. I tell her he's 26 months. I can quickly see her analyse him. She's probably not even aware she does it. I immediately follow it up with 'and your little girl?'
I keep the conversation going with the usual topics of parenthood - sleeping, outgrowing clothes, tiredness etc etc.,
Luckily the class starts before I'm quizzed further.
I don't hold back on spreading awareness. I'll tell anybody who wants to listen all about Prader-Willi Syndrome but sometimes, I just would like for him to just be himself- no labels attached.
He's just that lovely little kid, who always shares, loves to dance and sing, loves music, has a beautiful smile, an infectious laugh. I'd love for The Lodger in his music class to just be himself- not PWS.
I feel guilty for having the thought. I just sometimes like to be PWS free.
A day where I don't have to explain PWS and complexities of symptoms associated with it.
Just before his second birthday, we were at the garden centre andThe Lodger was happily sitting in the trolley, waving at everyone. He's very engaging- everyone always stops to give him attention. He made friends with a woman as we waited in the cash register line. They started playing peek-a-boo and I knew the inevitable question was coming- 'What age is he?'
'He's one' I replied. (not a lie 23 months is still age one)
'Isn't he just lovely' she replied, 'He's the sweetest child'.
I smiled and thanked her and as we walked away- he was smiling and waving- with a queue of people waving back.
It was a lovely moment. No PWS, just The Lodger.
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