Last week was a strange one for me.
It was Summer Fair and Sports Day at Twiglet’s school, both held under looming grey skies and the constant threat of rain. The conditions couldn’t have been a greater contrast to the weather of the previous year, yet I was happy.
I remember last year sitting on the school field in brilliant sunshine, listening to the chat and laughter of other parents, cheering on my son but feeling utterly alone. We had just had the results of Pudding’s MPS screening test, and although we couldn’t be certain which of the conditions he would end up being diagnosed with I had my suspicions; none of the options were particularly encouraging.
I hadn’t spoken to Hubby about the diagnosis before then, as he had too much else to think about with work. The evening after we heard that positive result though, he had asked me, ‘So what is the worst case scenario?’ And I had told him, and watched the news hit hard, and held him as he sobbed.
It is hard now reading back over what I wrote in those early days. The news had peeled away everything else, leaving me raw and terrified, but unable to blurt out the unspeakable to anyone except a close few. The summer that followed was unbearably long, full of stressful appointments and assessments, and I felt like at any moment I would fall apart.
At the time it was impossible to believe that we could ever be happy and normal again. Yet gradually we have reached a better place. And this summer will be so much better than last. Having Pudding’s weekly enzyme treatment at home and not having to travel to Manchester as often makes life far easier. We have visits to Drayton Manor and Grandma’s house to look forward to, as well as a week away in Warwickshire. Our respite hours are giving the rest of the family a bit of a break and we’re planning fun things to do. Mainly though, I know that the days when I end up in a soggy heap will be the exception rather than the rule.
Those days will still happen, I know. One of them was on Sports Day. Just as I was congratulating myself on how far we have come, I got back home to news that a child from the MPS II community had passed away unexpectedly overnight. I didn’t expect to cry so much – I had never met him and had had very little contact with his family. But cry I did. I cried for his parents and brother who are facing this awful loss. I cried for the other MPS families who will be hugging their own children close and wondering if it will be them next. I cried for those who have only lately heard about MPS and are wondering how they can cope with anything as terrible as this. And I cried because sometimes that is all you can do.
R.I.P. Tucker (2000-2016)