Wednesday, January 8

Back on her feet

After PICU, Wriggles made what appears to be a full respiratory recovery (that is, as well as she was pre-RSV as opposed to amazing lungs) but the impact of being unconscious and ventilated and then bedridden really took its toll on her body and even without the snakes and ladders world that is cerebral palsy, she really took some back steps. When we were discharged she was still having to re-learn just how to sit. Slowly over the coming weeks she rebuilt her strength, but my it was frustrating. For me, but so for her. Her brand new skill of independent walking was so new and so hard-won it really wound her up that suddenly she couldn't do it anyway and to add insult to injury, she didn't always have the coordination to crawl. Although her behaviour wasn't terrible, she was definitely much harder to manage in the weeks leading up until Christmas and she put a lot of her energy into shouting. Loudly.

Although I told everyone I was sure she'd be walking again by Christmas, as the days ticked by and she wobbled through them I begun to wonder if I was perhaps getting ahead of myself. After all, no one imagined she could get so sick so quick, so it was not entirely ridiculous to imagine taking a more semi-permanent back step as a consequence.

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And then, just days before Christmas she did it. Again.

I couldn't quite believe it. Just a few very uncertain steps to me in the bathroom ('helping' hang washing...) but they were there.

Then the next day she did them again and again. And that was that. Again.

It is funny how quickly you forget the anguish, the mind numbing crawl of time as each day ticks by with no miracle, the churning of your stomach, the heaviness of your heart when a dream is realised.

I could not have asked for a better Christmas present if I'd tried. And judging by the beam on her face throughout the festive period, neither could she. It really did make Christmas, which went really quite smoothly given the turmoil of the previous month and the uncertainty of the weeks leading up. I am resigned to the fact that thanks to her cerebral palsy, though mild, will always exaggerate bad patches and make her little body work harder than it should have to. It just makes you savour the good bits and the developmental leaps inbetween when they do finally come around.

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This week she has finally restarted nursery sessions again. The first day she was happy to go in but rather clung to her 1:1 worker. On day 2, she toddled in cheerfully with a gigantic knitted crocodile stuffed under one arm trilling "bye bye mummy!". Although it stung a tiny bit, it mainly made me feel so proud I could burst that she was such a confident little person given everything she has been through. The progress she has made in just six months is astounding. Of course we've still got hurdles to leap, things to work on, things that are uncertain. But for now, I'm not thinking of that. For now, I'm just enjoying the moments while they are here.

Sunday, January 5


As a teenager, I grew up swiping my mum's Bridget Jones books and reading them, half hoping they were purely works of fiction (as a somewhat scatty hapless seventeen-or-so year old myself) and half hoping there really would be a woolly jumpered Mark Darcy out there as well as a mildly amusing job and good Urban Singleton friends to while away adulthood with. One of the bits that made me laugh was a scene describing Bridget being 'smug-married' at a party by her goddaughter. "Bridget, why haven't you got a boyfriend?" asks the little girl.

Today, Wriggles and I were having a rather nice time at a third birthday party for a fellow special care friend. I was on my turn child-watching in the thick of soft play, when one of Wriggles' fellow comrades turned to me, frowning. She looked over at the table where her baby brother was napping and the area for small people where very-wobbly littlest people were hanging out.
"Amy," she said. "Why haven't you got another baby?"
Oh dear, I thought.
It is bad enough when adults ask; number one reason is because I haven't got a partner. However, I suspected her parents would not thank me for an early induction into the complexities of life, reality and a sampling of biology classes to come. Wildly, I looked around for back up. Where is your own daughter when you need her?
"Shall we have another go on the slide?" I asked brightly.
Thankfully, she shot up the ramp like shouting at me to follow. So I did. You can't ask too many more awkward questions whilst screaming "wheeeeeeeeeeeeeeeeeeee!". And so that was that.

It did make me think though. Really, it was more funny than anything else. Although Wriggles' language is a little delayed still, her peers we know are at the stage where asking "but WHHHHY?" is their favourite past time and for all of them, it is obvious they are watching the world carefully and piecing together information to form the basis of assumptions, beliefs and security. I know she only asked me, because I was there at the time. Although most of the mums and dads I met when Wriggles was small are adding to their families, we were by no means the only one-child family at the party and certainly not within a social circle. I'm pretty sure I was the only single parent there, but that is a whole other ball game and I am secretly quite glad Wriggles has not yet got the words or inclination to ask why she doesn't have a live-in daddy like her friends do. I have no doubt it will happen, probably far sooner than I want or think, but for now I can pass off playground equipment as distractions and pull silly faces as answers. Damn this development thing.

I remember shortly after Wriggles was born, someone well-meaningly pointing out that by embarking on the ultimately probably terribly fufilling path of single parenthood, I was possibly sacrificing things further down the line, or would at least have a lot more obstacles than I might do otherwise. Of course, I don't regret it. I didn't know then and I don't know now how things might have turned out if I hadn't had a child then. Would I have ever had one? Statistically, it is very possible I would. But maybe I wouldn't; and faced with the reality of a small, wriggling bundle of half my genes I wasn't willing to take that risk. I had that chance now and it was unconventional and far from how I imagined, but who knows how life will really turn out? In many ways it hasn't been easy but I cannot imagine life without a child; my child. I suppose now she is reaching the point where equally things medically are settling down and life is becoming more relaxing (that is, more relaxing from a developmental point of view, not actually relaxing because she is a mad as a box of frogs) and also because this is the age where many people around us are having babies, and whether you are in that position or not, it does make you think about how your life is turning out and what it may do in the future: or not. When Wriggles started preschool back in September, there seemed to be babies everywhere and for a while it really hit home that there were very much just two of us and that that was not changing any time soon.

Quite aside from being a single parent, there is also the small question of her prematurity, the effects that have shaped the last 3 years and how that might come into play even if I was in a position to think about having a different family unit. Talking with friends who are contemplating providing a sibling, they are arguing out finances, bedroom quotas, having the patience for dusting out rattles and teething toys-understandably huge decisions after you get used to having one little whirlwind and all the practicalities and emotions they bring with them. When I think hypothetically, quite aside from all of that, I would want the blessing of a very good obstetrician to hold my hand and promise me I would never have to walk into a neonatal unit again, never have a terrible birth, never swim through the fog of skewed mental health, never have to visit and re-visit children's wards, outpatients and think about disability, however small. 

Also, Mr Darcy has not yet put in a permanent appearance.

I never imagined I would have one child on my own. I never imagined until I had that one child, that loving her so much would make me wish for another. I never imagined, as a teenager back then reading fictitious books that life could get really very complicated and that things that look so simple-finding someone you care for and managing a relationship-could be so fraught.

I'll let Wriggles and her friend discover that in their own time. Preschoolers birthday parties are neither the time nor the place. Particularly when there is a Hello Kitty cake to be eaten.