If you know me in real life and have found this blog, please honour my wishes and don't read on. I need this place to freely write my feelings to help me to heal and if you're reading, I'll censor myself. I have no way of knowing who is reading so all I can do is trust you to honour my wishes. Thank you.

(this doesn't apply to any of my fellow mums of angels I've been lucky enough to meet in real life)

Tuesday, November 23, 2010


I was sending a link to someone today about BWS and I'm not sure why but I clicked through to the prognosis section and for the first time in months read the following:

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

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.

Max is growing, still wonderful, still beautiful, and everything else. And I still miss Matilda everyday.


  1. 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.
    Life 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!)

  2. 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.

    Sending 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