Saturday we all went to a party for a child’s birthday and my middle boy, N, has Prader-Willi syndrome and watching the other children play especially ones at or near his age of 4 years old it was really apparent to me how different he is.
It’s not in looks or anything like that but how he interacts and he is very much slower than his peers in his feet, intellectually he is very clever, knowing more than his peers. N can do his alphabet, spell his name, count to 50, knows his colours and shapes. Speech wise he is delayed but is improving every day since he had surgery 6 months ago to insert grommets into his ears.
I laid awake Saturday night worrying about the future for him, worrying about him starting primary school this coming September. Will he be able to hold his own against other children who lets face it can be cruel. Will he be able to do what’s assigned to him, will his behaviour change and so much more on repeat in my mind that I couldn’t sleep and found tears falling down my cheeks because even though he was diagnosed back in 2014 at 8 weeks all I still struggle to comprehend it all.
Why did it happen to N, why did it happen to us? The weirdest thing is some days I forget that N has PWS. He is a bright, smart and loving little boy and people fall in love with him the moment they meet him. Will N ever be able to marry, he can’t have children as he is infertile. This saddens me as he will never know what it’s like to be father. He may not be able to live an independent life. He will always have to be monitored by us, by health professionals.
Since the party on Saturday this has been weighing me down, making my anxious about everything that I’ve tired to forget for now.