Monday, June 24

Being Diagnosed

It is coming up to year since we got an official diagnosis through for Wriggles and has been playing on my mind quite a lot. I rather wish it would go away, but it appears those memories are filed in good and proper to go down in technicolour glory with other important life events. I can recall vivdly walking away from hospital after an outpatients appointment and saying to my mum in a daze "Wriggles has probably got cerebral palsy." And a few weeks later coming home to a nondescript white envelope bearing an NHS post mark, reading it in the bathroom, my heart thudding as I read the final and official paperwork: cerebral palsy. My head spun and I thought I would pass out. That night was the first time I drank anything alcoholic since Wriggles' first Christmas, desperate to slip into a haze and blot it all out. Desperate to keep on remembering my little girl for being her, not for having a damaged brain. The silly thing was that in all honesty, having a label made things easier. I always knew she was at risk of having something long-term and our physiotherapists were never anything but honest and realistic. But somehow the finality of that moment was a blow. In hindsight it was actually rather a start of a new chapter but at the time I would have given anything for it to have been the end; to have instead passed everything with flying colours and leave all the worry, concern and fear behind.

I spent a long time, both consciously and unconsciously bitter that it had taken so long to confirm the "truth". Cross and hurt that so many times I'd been made to feel inferior and a needlessly anxious mother when in actual fact I was grasping at the right straws. Now the emotion is less raw, I think that maybe we were diagnosed at the perfect time, if ever there was one for imparting news a parent never wants to hear.

At 2 years old, she could sit unsupported, pull to stand and cruise a little. She could just about push a wooden truck or walker along and was an expert crawler. She was finally babbling and increasingly demonstrating good understanding. She had firm likes (painting, Noodle the hedgehog) and firm dislikes (food, nurses). Not wildly remarkable but a good benchmark to that she could make progress albeit on her own terms. Now I look back and wonder, had we been diagnosed earlier, would I have coped as well? Arguably yes because there is no choice in it. But I do feel it would have been harder. If she had been diagnosed a year earlier, I wonder if I would have felt quite desperate in querying her abilities and future. At 1 she could not yet sit on her own, crawl or roll and showed very little response to language. Without a lot of milestones to yet go on, how would I have felt, would I have cried more tears, had less hope? By the actual diagnosis, I had a taste of hope and needed answers. Earlier, I think I needed hope more than anything else. If they had left diagnosing any longer then I know I would have been frustrated, angry at the service provision and anxiously allocating blame, probably much on myself. Around the time of knowing, the gap between her peers and her was growing noticeably wider and explanations were getting increasingly flat and half-hearted. If I hadn't had that magic letter by now, the last months of snakes-and-ladders progress would have been at best bewildering and at worst, upsetting. With conditions come studies, answers, prognosises and research.

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 It hasn't been a walk in the park but equally it hasn't been as scary as maybe I thought. One of the main things is that by addressing it and giving it a name, I feel it has given as a bit of a full stop to nosey questions, pitying stares, quizzical enquiries. And for me, rather than wondering why and when my baby girl might achieve what others around her seemed to be doing every two minutes, it has become even more a badge of pride; that despite a lable, Wriggles can do things. If I could show myself, and Wriggles, on her first birthday what she can do now to look forward to it would have been the best gift. If I could have looked these months into the future upon recieving the diagnostic letter, it would have been additional peace. It looks like our world is made up of baby steps, not big strides. Wriggles is getting there, slwoly, surely, with both hiccups and help along the way. It still hurts when I see children far younger run with abandon around the playground but equally, I used to wonder when the day would come that Wriggles could scale a climbing frame, even with help. I'm coming to realise I will never "forget" she has a disability, that it will not go away and that there are many hurdles to jump in the future. But I also now know that that is just one part of life. Diagnosis is not the same as an expectation, either positively or negatively. It is not a marker of what someone will or won't achieve. Some people say a diagnosis is "just words"-for me, it is so much more than that. It is a key, it is a world come crushing down but also a new world opening up. It shifts the angle of your world, but it won't rip it off the axis. Life keeps turning and keeps happening in the bleakest hours to the most joyful of days. It turns out we were living hand-in-hand it cerebral palsy all the time, just now I know it is there. It will always be; disabilities don't take holidays or annual leave. But it's host has an enormous personality and the brighest smile to overshadow it. And that will leave far more of an impact that two medical words ever could.


  1. Diagnosis is not the same as expectation....

    I love that sentence. Wriggles will outshine it.

    I had a boyfriend with severe quadratic athetoid cerebral palsy, he was in a wheelchair, and spoke using a computer.

    Within a few hours of meeting him you would completely forget all that, and be captured by his stunning personality, his laugh and smile.

    I am sure Wriggles can outshine anything that threatens to hold her back, because she has an inspring, courageous mother who I am so blessed to have in my life.

  2. I've been reading your blog for over a year and I've see amazing progress over the past year. Never mind what the other children are doing, Wriggles will continue to progress at her own pace and every year will be [developmentally] better than the last. That is a huge lot to look forward to. And, in a few years time, she will know what her personal goals are and she'll be working with you to achieve them. You are a fantastic Mum and I look forward to many more milestones over the coming year. xxxx