Every time I think I’m coping well again, it seems like I get hit back down. I’ve avoided posting on here in the last few days because I was well and truly in the slough of despond. Nothing seemed worth the effort and I was crying every day.
My hair was shaved off, my release of doing the play was over, trips to Manchester would be continuing and we would have to stay there for longer as the infusion rates would be slowed down. Filling in a form the other day I was stymied by the question ‘What do you want for your child in the next 3-5 years?’ I sat and stared at it for minutes, tears gathering again.
I couldn’t write on here. Even I was getting fed up of my misery, let alone any poor souls who are reading this.
A few other MPS mums have said to me recently that the first year is the hardest. I have to keep reminding myself that it is only four months since our world was turned upside down. Six if I count from when the pediatrician first mentioned MPS. It’s no wonder that it is hard still.
So why am I writing now? I’m on the up again. And perhaps strangely it’s because of the trip to Manchester yesterday. Yes, it was a longer day – we set off at 7.15am and didn’t get back till just after 6.30pm. Yes, it’s hard at times to keep Pudding content while stuck on a bed for over 4 hours. But the upside is I got to spend the day with two wonderful people. I remember many moons ago there was a TV series about nurses called ‘Angels’. I never thought much about that title at the time, but now I know how true it is.
All the team that we get looked after by in Manchester are amazing. They help parents like me through the most difficult times. They understand. They listen. They push me out the door to go get a drink. They hold me tight through the tears. They look at Pudding with love and tenderness. They manage appointments and do everything they can to make things easier.
I’ve always been a middle ground sort of person. Ask me to rate a service and I’ll never give the extremes, but would always choose the less definite ‘good’ or ‘poor’. Yet, filling out the feedback form for their upcoming assessment by the Care Quality Commission, there was no doubt in my mind that 5 out of 5 was the minimum that I could give on every single question.
I honestly don’t know how I’d have got through all this without their support. Angels indeed.