New Year is a pretty obvious time to look back over the last year and on to the next, but with us, it has a particular significance. It’s been a year and a day since the paediatrician first mentioned Pudding had ‘coarse features’ and it was worth checking for underlying reasons for his development delay. It’s been exactly six months since we had the diagnosis of MPS II confirmed.
So what have I learnt in this time? Apart from a lot more than I ever wanted to about MPS.
1) Knowing is better than not knowing. All the most difficult times I’ve had are when we’ve been waiting to hear something. Ignorance may be bliss for some but for me, no. Knowledge helps me feel more in control.
2) Helping others helps me. I’ve definitely given more to charity in the last few months. Not just the MPS Society, but other random causes that I read about. I’m also trying to be more aware of what others are going through. Some people worry they have no right to complain to me about their own lives now, but I very much believe that everyone’s pain is their own, whatever they are going through. All struggles are valid and I hope by listening and caring I can still help in a small way.
3) Hugs are powerful things. Just before Christmas when we were on the research ward another mum was obviously getting some bad news about a diagnosis. After the consultant left I went over and offered a hug. We stayed like that for a while. We didn’t talk about her child’s illness or Pudding’s. We didn’t need to. As I left a few hours later she thanked me with such gratitude. It was such a simple thing to give, but meant a lot to her as it has to me at various times.
4) Twiglet is going to grow into a wonderful boy. I’ve done my best to inform him about MPS without telling him things that he doesn’t need to know yet. His usual verdict (when not getting whacked) is that his brother is cute and that Hunters is great because we’ve had a trip to Legoland. He doesn’t know that the future may not be quite that rosy. But he has certainly seen me cry a few times lately, and has responded in such a comforting way. My nearly six year old is growing up fast.
5) I have a good marriage. Hubby and I have had occasional niggles since having children – who wouldn’t when sleep is disturbed and there is no space for your own thoughts? But he is so much more generous and better than me at apologising. He makes it impossible for me to sulk at him for long and I am grateful for that. Diagnosis of a serious illness is a known stressor in marriage but if anything we are getting stronger. Love you, Hubby!
6) Whatever the future, Pudding will be looked after. From the lovely nurses, to workers at school and playgroup, and family, Pudding wins hearts everywhere.
7) My sister is my rock. There are many other people around who I know would be happy to offer a shoulder to cry on, a childminding service when we’re off to hospital again, and so on, but my sister is special. She has just always been there – from our early days of playing together, through teenage arguments, living together when I first moved to York, and attending the birth of both my sons. When I was struggling lately, she ran me a bubble bath, made hot chocolate and fed me jam tarts. I would be lost without her.
8) I can survive this. I’ve got through the first difficult months after diagnosis. We may face many more challenges, and I know some of them will be horrific, but with the support of so many people, friends and family, how can we fail?