Tuesday, July 24

My Happy Girl

Today, I had some friends over. This isn't exactly unusual as we often meet friends either out or in, singularly and in groups. Today's friends are those I don't see every week, and the four of us adults lazily amused my adorably smiley little girl who was clearly in her element basking in the attention of quadruple what she is used to. For a bit it made me a bit sad that my family is not the "traditional" idyll it could have been if things had been different. My friends visiting have been on our journey since the beginning, and the two of them that I have known for longest were rocks in the long PICU days, often giving up time to come and sit in the claustrophobic room with my comatose baby on the brink. None of them have children yet, and as much as I love my mum-friends who save my sanity and make days of the week go quicker and more enjoyably, it is also refreshing to be with caring childless friends who don't have the worries, competitiveness or strains of child development, or the lingo that goes with it. Questions or comments were made innocently, curiously and sympathetically.

"Why isn't she walking yet?"

This is a question which normally riles me, brings my defences up and prickles at my soul. Yes, I know she is nearly 2, I know all her peers are walking, I know maybe she "should" be. But actually, today it didn't make me cross or upset. I explained about the prematurity thing and corrected age and that the repetitive illnesses have delayed development on top of any genuine delays. I explained about the muscle tone and that that was why we had multiple input (which I think baffles many people, because Wriggles looks so perfect they can't imagine why she would need it) and that we were still sort of in limbo to see if it was worthy of a diagnosis that may have more long term implications or whether it would sort itself out. That it may prove to be more positional, more muscular, more structural or more neurological or a combination of some or all of the above.

We all looked at the happy squwarker, who was troubling the book box.

It wasn't bothering her.

She didn't care.

Everywhere we go we receive compliments as melts everyones hearts and charms the socks off people. She really is the most lovely little person I could ask for, and I know our family and "urban family" of extended friends all cherish having her, us, in their lives. When you think of a medical problem, or situation, or label, a certain stereotype can spring to mind. Before this whole journey, I'll admit maybe I was biased to. But over the last 22 months, everything I ever thought has been challenged and I've drawn up a whole new set of preconceptions, of expectations and pleasures. Seeing beauty in things and people and celebrating wonderful children who might otherwise have lead very different parts. We've met those with far more severe limitations and those like ourselves who straddle the border between one camp and another. Those who may well have been in for a much-rougher journey but by miracles of fate and luck, have actually bypassed any hardship and unexpectedly followed a very expected pathway. And all of their parents feel the same way about their children as I do about Wriggles. 

It's so easy to become pre-occupied with labels and names, and sometimes they are necessary and very positive. They open doors to help, provide support for everyone and give answers. Sometimes though they can overshadow the person that has been labelled though. The smiling child.

As I explained today, I can't predict where our future will take us. Sometimes I suspect it is one thing, and sometimes I think another. I'm not sure I would be overly surprised either way as to getting answers or not getting answers, especially as our wonderful physiotherapy team have always been very gentle and honest with us. I have to put my faith into a professional which although I can grasp the basics of, have no idea of the more technical or complex aspects. I can put my faith in my little girl: that bit is easy. But strangers? Will they know how special she is, how much she deserves? That is the hard bit. I can take not knowing when things will happen because I trust they will. I just want everyone to see the best in my happy wrigglebottom whether she gets a new "name" or not.

What would you call me?

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