In a parallel universe

I read a book once (no idea which book) that talked about a theory of infinite universes. For every universe you brushed your teeth in this morning there was another one you didn't. For every universe you decided on the white top there was another one you decided on the black one.

So maybe there's a universe out there where the genetic screw up that caused Matilda to have BWS didn't happen. In that universe she would have been born about the 11th of December, and we would've wondered throughout the pregnancy if she'd be late and I'd still be in hospital for Christmas (there's Christmas and Boxing Day babies in my family). And we'd be planning a first birthday party full of pink things. It's hard to believe now.

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Max is growing and growing. 6.4kg last week at 9 weeks old. He's starting to smile and coo. And in the night as he feeds I marvel over the miracle that gets babies here alive and lets them grow.

Ouch

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

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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.

A year and one week of grief

It's been a year and one week of waking up everyday as a mother who can't look at her perfect firstborn daughter, can't hold her against my chest, can't kiss her cheeks, and can't stroke her head. We've passed through all the firsts - first Christmas, first Easter, first birthday, and first anniversary. I wish I could say it's bought some sort of peace upon me but it hasn't. She's still dead. We still have the memories of choosing a pink casket for her and getting a phone call saying 'we think she'd be more comfortable in a white one, is that OK with you?' and after saying yes and getting off the phone turning to my husband crying and asking him 'they mean she's too little for the pink one, don't they'.

The above makes it sound like I'm sad all the time but I'm not. I think about Matilda every day and I cry often. But for large periods of the day I'm happy, I'm looking after Max, kissing his cheeks, hugging to my chest, making bad jokes and reminding my husband he's meant to laugh at them, and wondering what to have for dinner.

But then it hits me once more out of the blue - I had a baby girl, she should be one, I should be watching her learn to walk, and dressing her in pink dresses. And I wonder how this happened - how it is that I'm 29 and I have a child that died.

And everyday I look at Max and I'm grateful beyond words that he is here. That I know how incrediably lucky that makes me.

Dear Matilda

A year ago today our hearts broke - first we found out you were very very sick and then that you were going to die. I'd say it was the worst day of my life but that's not true. It was also the best - we got to hold you for the first time. Our precious first-born baby.

We love you more than ever.

Mum and Dad xx

Hope and Guilt

Since Matilda died, I've wondered if I really ever thought she'd be coming home with us. Not based on intuition that some mothers have about their babies who die after uneventful pregnancies but based on our complicated pregnancy and Matilda's prenatal diagnosis. I have real trouble trying to remember what I thought about babyloss before my pregnancies. It seems like I've always been this person that's had a baby die but that's not true - this time last year, I believed we'd be bringing our baby home. I must have. Over the first three days of Matilda's life we took about 20 photos - if I thought there was a chance she was going to die I'm sure I would've taken hundreds. On the day she was dying the nurses took lots for us. I remember today last year - she'd had her first setback so wasn't looking as healthy (as healthy as you can in the NICU with lines everywhere) - we took the camera down but then only took two photos. I didn't want to have photos of her looking so sick. If only I'd known that was the best she'd look for the rest of her life. The only photos we have with all three of us are when she's dying.

The other reason I must have believed she was coming home was a conversation I had with DH about buying a breast pump. During the pregnancy I was really funny about buying things and getting ready - scared of 'jinxing' things. DH kept saying we needed to buy a breast pump because we knew Matilda would be spending at least a few weeks in hospital but I kept saying no lets wait. But once she was here DH was saying we needed to buy or hire one for when I was discharged and I said 'We do and I don't know why I didn't let you buy one during the pregnancy because we were always going to need it.'

Matilda's birthday was sad but not the awful day I was dreading. We went out to the park with Max for a few hours which was nice. I'm sure if Max hadn't already been here it would've sent me much lower. The reality is that a newborn baby just requires too much attention to be able to think about Matilda constantly over these days she was alive. And I feel guilty about that - like she deserves more from me. That I couldn't even give her a year of devoted grief.

Tomorrow is the anniversary of her death. I'm planning to a breastfeeding meeting with Max. I feel guilty about as well but I've relived the day she died in my mind so many times I just don't think I can stay home all day and do it minute by minute again.

Today is Melbourne Cup today. For those of you not in Australia it's the horse race 'that stops the nation'. It's all over the news. Every workplace has sweeps, lunches, etc. Everyone places bets on it even if they never bet on another race ever. Matilda died on Melbourne Cup day so even though today's not the anniversary it's pretty hard to get away from. At 5am this morning I was watching the news and it's all about the Melbourne Cup and I remembered watching the same morning news as I pumped last year. Then we went down to the NICU at 5.30 and found Matilda surrounded by doctors and were told she was bleeding in her lung again and was very very sick. Watching that coverage at 5am last year was the last time I joked and had hope for a very long time.