When Pudding was first diagnosed with MPS I thought I’d never be able to smile again. If you are told that your child has a life-limiting illness it is like your whole world has just ended and nothing will ever be the same.
Other parents told me that the first year was the worst, and I wanted to believe them but couldn’t quite. How could I ever come to accept this.. this awful reality? The weekly ERT infusions, the operations, the news about damage to airways and heart, the continuous punches in the gut which come with each new revelation.
But the other parents were right. Things do get easier and the new normal becomes …. well… normal. I’m often told that my blog posts make people cry, even now, and I’m always a bit surprised. I don’t intend it to be that way. I rarely cry myself these days. Never say never, of course – this is not a reality I ever expect to embrace wholeheartedly.
ERT has become a weekly routine. Even the monthly trips to Manchester are getting better. And it helps of course that we have hope for the future. So now I’ve reached the stage when I sometimes get days when everything comes together and life seems almost perfect. This week I had one of those.
In the morning we (me, Pudding, Twiglet, Niece and Nephew) set off for a visit to Nuzzlets organised by our local special needs group. I’d been told about it a while back by portage and knew that Pudding would love it. The chance to meet and feed lots of different animals would be ideal for my little snuggle-monster.
Almost as soon as we arrived the kids were cuddling and stroking kittens. The smile on Pudding’s face couldn’t have been wider. There was bird seed to put out, apples to collect in a wheelbarrow, hunting for bugs under a log, a field of sheep to walk through. Each activity was done just for a short time and most of the areas were separately fenced off so I knew that the escape artist would not be able to run off.
Pudding couldn’t stop giggling as the goats nibbled food off his hand. And apparently guinea pigs and giant bunnies don’t mind being force-fed a carrot. Even Twiglet deigned to have a rabbit on his lap. Completing a successful trip we managed to keep Pudding awake in the car on the way home. Meaning…
…That in the afternoon we continued our project on the Normans while he had his nap. I used to do projects all the time with the other kids – letters of the alphabet, finding out about different jobs, and so on. But as Pudding got bigger and more of a handful it tailed off. Since diagnosis I’ve hardly done anything like that with them. So it felt strangely elating to be designing our own shields, drawing a Bayeux Tapestry on brown paper packaging from one of the medical deliveries, and recreating the Battle of Hastings using Happyland people.
The day was finished off with listening to gorgeous music from Classic FM on my way to my writers’ group in the evening, and receiving a lovely present from a friend.
See? You don’t need to cry for me – on days like this life couldn’t be better.