In general, the prognosis is very good. Children with BWS usually do very well and grow up to become the heights expected based on their parents heights. While children with BWS are at increased risk of childhood cancer, most children with BWS do not develop cancer and the vast majority of children who do develop cancer can be treated successfully.
I try not to spend time thinking about the 'why us' aspect because it's painful and in the end, doesn't change things. But on re-reading this, it's hard not think about the fact that most other people who go through finding out their child has BWS, the complicated pregnancy, and the NICU time get to take their children home and watch them grow up
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On a different topic, I posted in the Glow forum about finding it difficult to relate to the other Mum's at mothers group. I desperately want to make friends with other Mums but I can't help feeling like the odd one out. And I'm scared - tomorrow we're talking about 'Adpatation to Parenthood'. I'm scared it's just going to be everyone talking (complaining) about the hard parts of parenting. I know parenting isn't all easy and I also don't think women pretending everything is wonderful when it isn't helps either. But I can only cope with so much of it from people who don't really understand just how lucky they were to fall pregnant, have uncomplicated pregnancies, and bring their babies home. So I guess we'll see how we go.
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Max is growing, still wonderful, still beautiful, and everything else. And I still miss Matilda everyday.
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I researched BWS also, after "meeting" you in this awful, terrible way. I also read with a heavy heart and wondered why it was Matilda that had to be the one who suffered the poor outcome.
ReplyDeleteLife and death are just huge questions that can never be answered. It's just not fair.
I think of you every day.
(As for mothers group, I get you. I stopped going. Dont be afraid to not turn up if you dont feel like it. You will meet other mummy friends in the most unlikely places! Like the escalator, in my case!)
Oh Maddie, I hear you - the news about BWS and positive prognoses, it's heartbreaking - it's like me reading that shoulder dystocias carry between a 5 and 20% fatality - it's that "so why did we get the short end of the stick?" I hate being on this side of statistics, it's just not fair.
ReplyDeleteSending lots of love. I can only imagine the difficulties inherent in "new mommies" groups and trying to find your place right now.
I'm glad to hear Max is as beautiful as ever. xo