Tuesday, 15 December 2009
All about Tyran
I'm not usually given over to sentiment, however, today I need to indulge.
6 years ago today we were given some devastating news after our baby, who was a few weeks shy of his first birthday, was admitted to hospital. Pneumococcal meninigitis. If ever there were words to strike fear into my very core, those were them.
None of the news was good either. After spending a day arguing with various health professionals about the seriousness of my baby's condition they finally agreed to carry out a lumbar puncture, which confirmed our worst fear. Sadly they'd dragged their heels for 18 hours by that stage and could offer us no reassurance at all. All we were told was that our baby might or might not make it through the night and that only time would tell. We were assigned 24 hour nursing care simply to watch him and us, there was nothing else anyone could do. We slept a little in our chairs, but never at the same time and never restfully.
He did make it through that night. An angel of a nurse brought him a little polar bear that she'd gone out straight after her shift to buy, saying that she had this superstition that if she bought a little gift the baby would have to pull through to receive it. But although he pulled through, he wasn't yet ours again. It took him a couple more days to regain consciousness and then we celebrated.
I don't want to bore any of you with detail that you already know and I don't know that I'm ready to tell anything in detail to people who don't know it (6 years may be a long time, but many things need more than 6 years to heal). Suffice to say our celebrations were cut short with heart breaking circumstances. He started to fit. Just one here and there to begin with, but they increased in frequency and duration rapidly. Status seizures could only be controlled by putting him under general anaesthetic and he was blue lighted up to London to ICU. 2 MRI scans a few days later showed some brain damage and all the consultant could tell us were that although it looked like he'd definitely pull through, chances were he might not walk or talk. My baby couldn't smile, couldn't suck, couldn't chew and couldn't sit up on his own. In short, he was more helpless than a newborn.
But we worked. How we worked!! It was easy for any of us, but we kept on working. We fought for therapies, we fought for support, we fought for services. We got most of what we fought for and we got a very lovely paediatrician who kept us feeling optimistic, but realistic. She warned us that although he was recovering well, the likelihood of learning difficulties was fairly high and chances were we'd see behavioural issues by the time he was 6.
Today that little boy will take the leading role in his school play. Today that little boy will continue with the extension work offered to gifted and talented pupils at his school. Today that little boy will run and play and laugh. He'll talk and read and write. He'll show his gentleness and kindness to his sister and his unconditional love for us all. Today he'll mostly do the right thing and behave in the way that is expected of all well behaved 6 year old boys!!
He's not totally without difficulties. He still struggles a little with the oral motor difficulties that seemed to be the biggest side effect of his seizures. He was recently diagnosed with an auditory processing disorder that means he needs to work a lot harder than most of us to hear what goes on in class or anywhere noisy. But he never complains about it and never worries that he might be different. He just works harder to make up for it.
Of course, as in any situation like this there are people to whom I'll forever owe my gratitude. Ann was always on the end of the phone, offering advice and support from a medical point of view, and going way above and beyond the call of duty of a friendship. Doris was nothing short of amazing (and will forever be my hero) in her support and help to get Tyran back to breastfeeding after 6 weeks of it seeming an insurmountable task. Our friends and family offered prayers and support and positivity when there seemed nothing positive left. Most of all, he was given boundless love.
And how we love him. He is an amazing little boy and we're so proud of who he is and all that he has accomplished.