Reflecting on a year of being a special parent

This time last year I was probably having a moan about being heavily pregnant in the heat and waddling around after an almost 2 year old. We knew there were tough times ahead with a toddler and a newborn, no doubt about it, the two big obstacles we’d been preparing Chops gently for were sharing Mummy in bed at night and sharing his boobies. They were our biggest concerns, along with doing what we could to minimize Sibling Rivalry – the book by the same name lived in the glove box for car nap reading. The rest of it, the baby stuff, was easy, we were chilled, I was really excited about Miss Wriggles’ birth, I loved giving birth to Chops, it was by no means easy or straightforward, but I was really looking forward to experiencing childbirth again, she’d be slung by day and cuddled into Mama by night. Chops would travel on my back and Miss Wriggles would travel on my front.

This time last year this photo was taken, we went to the Olympics Rowing at Eton Dorney the day our girls won Gold! I was exatly 37 weeks pregnant, W arrived at 38 weeks gestation.

Very pregnant Mama watching the rowing

Very pregnant Mama watching the rowing 1 year ago, 37w pregnant with Miss Wriggles

Wow. If only we knew that in one week’s time we’d be having our baby delivered by crash cesarean after losing her heart beat during labour, that we’d spend 5 whole weeks being torn torturously between our two children, neither of whom had ever been parted from us. That we’d be spending every day doing physio, ensuring our little girl’s spine doesn’t twist up and her whole body doesn’t totally fail her quite so soon, that we’d face the reality of outliving your child, that I’d be spending way more time at a breastpump than I care to even think about, my nipples bleeding and tearing at the repeated pressure, that we’d have been in that really exhausting newborn phase for almost a year. Why would we?

We were blissfully ignorant to the realities of Cerebral Palsy, the most I knew of CP was from the kids who appear on Something Special, that was my only access to cp. I’d never even heard of HIE.

Hypoxic Ischemic Encephalopathy (HIE) – a condition that occurs when the entire brain is deprived of an adequate oxygen supply, but the deprivation isn’t total. Miss Wriggles, like her brother, had the cord around her neck and a true knot, they both had meconium in the water, unlike her brother she had the cord around twice, was 4 weeks earlier by EDD and was 3lb smaller. Chops was a close call, I still remember the look P and I shared when we were losing his heartbeat and the reality of maybe losing him was close and the gusto at which I pushed him out in three pushes the second I was asked if I could. My beautiful boy and my beautiful girl.

You see, one tough year on and look what we have. We have two amazing children. Yeah, so times are tough but times are also fabulous. I know I’ve said it before but I wish I could bottle up my babies right now, I know that in years to come I’d give anything to pop back to these tough times and be with my babies for just 5 minutes. I need to appreciate that more than I do when I’m having the sort of day where we’re just scraping by, time’s a-ticking and our babies are a-growing.

Look at what they’ve achieved in the last year. Chops has learnt to talk! On his second birthday he had a handful of words, we communicated through deep connection and baby signing, it was fine but now he can say anything he wants and talks in full well-formed sentences. He’s learnt how to use the toilet, pretty much by himself, we’ve simply guided him, he’s taken his time and now uses the toilet very well with minimal accidents. Today he did a standing up wee in the toilet because his new underpants have a hole in like Daddy’s. He’s a seriously amazing little guy. He does 24 piece jigsaws by himself, he loves nothing more than to read book after book after book together and he has the most wicked sense of humour. He’s a little monkey too, the two probably go hand in hand. I don’t feel he’s had the best I could be at all times in the last year, I’ve snapped at him for misbehaving, or I should say behaving exactly as a 2 year old is supposed to be behaving, more times than I want to think about, I know that we’ve had shit to deal with, but that’s not his fault and he gets a tired grumpy Mummy some days which I see being reflected in his behaviour. But mostly we just have as much fun as we can, between feeding and pumping, but we’ve found our way with that, it involves a certain Bob and one Postman Pat sometimes, but he’s happy with that and it makes pumping time a positive time for him.

Chops eating ice-cream, happy boy

Then look at our little girl, we don’t think they thought she’d see the Winter out, there were times we wondered if we’d have her for very long at all, every day was a blessing. During her first few weeks and months I learned of babies that friends on Facebook that hadn’t made it, there were born not breathing or lost a battle early on, I didn’t know about a few of them and we felt so grateful. She’s gone from simply making it through each day, we wee wondering if she would be able to use any of her body to a little girl who smiles and coos, uses her arms to reach for objects intentionally and kicks her legs, often bringing them up to her chest, lifting her bum up. She holds her head up for periods, up to a minute sometimes, she can see, she can hear (with her hearing aids) and she smiles like crazy at her big brother, she adores him. When he bounces on the bed and she’s in her cot attached to our bed, she giggles her own little giggle, it’s beautiful. This last week she’s weaned from phenobarbital and she’s so much more alert, smiling and reacting to all sorts of stimuli, it’s astounding.


So much can happen in a year, it’s a very long time. People have asked often how we do what we do, how we cope, they say they couldn’t do it, I don’t agree. I think, as a parent, you just do it. If you’d have picked me up a year ago and put me down in my life today I may well have a breakdown but that would be the case regardless of W’s extra needs,two children is a whole new ball game as an attached family, well as any family. Our children grow and change so slowly and we grow and change with them. We adapt to the needs of our children as those needs change.

The next year will be better, though.

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