Ten years on this emotional roller coaster.

Ten years of appointments and tests.

Ten years of watching every change and symptom and wondering which are serious.

Ten years of hugging my boy just a little bit tighter because I don’t know how long we’ll have him.

Ten years of being able to spell mucopolysaccharidosis, when most people have never even heard of it.

Ten years of waiting.

The first years after diagnosis were truly awful. As a parent I can’t imagine anything worse than hearing that your child has a condition that will kill them. Looking back at early posts, I feel such compassion for the mother pouring out all that raw emotion on this blog. It’s compassion for myself of course, but it feels so long ago and like it was a different person. Because of course, nobody can live like that for ever.

There have been so many changes along the way – in my sweet Pudding, who can no longer run or talk or smile or even eat in the way he used to – but also in myself. And in this blog also. I rarely put anything on here now – finding it easier to update occasionally on Facebook.

Sometimes though, I still get the urge to write, to pour out all those emotions again. Writing can be therapy – a simple release of pent-up thoughts and feelings, sending them out into the web to hopefully receptive ears. It has got harder though. More complicated. At first after diagnosis my emotions were hard to deal with – anger, fear, confusion – but they were common reactions to grief, acceptable even. As time goes by though, I have sometimes held back, unsure whether I can share more difficult thoughts. Whether I can admit to not being or thinking as a mother should.

But as the family support worker at Martin House told me, none of this is supposed to happen. No parent is supposed to hear that their child will die. So is it any wonder that these thoughts come up?

You see, earlier this year Pudding was going through a difficult patch when he cried and cried and we didn’t know why and we couldn’t comfort him. Tears from your child do horrible things to you when you don’t know if they will ever end. I held his hand and he looked into my eyes and he continued to cry and I told my sweet sweet boy, ‘I want you to die’.

There you go. That’s the mother I am.

I could say that it was for him, that I didn’t want him to suffer any more. And of course I don’t. I’ve written before about how I want his end to be quick, with no pain. But in that moment of desperation (and I have to admit, still now as well) I wanted it for me too. However much I love my boy, however much I take comfort on the good days from his curly head resting on my shoulder and his quiet breathing, however much I live in the moment… ten years of waiting is too long.

I’ve always planned and researched the next stages that MPS will bring us, and have always struggled with the unknowns. And of course, the biggest unknown has always been ‘how long have we got?’. As he has slowly lost all his skills and heads into the final stages of this condition it feels more and more like a waiting game. And despite the peace and gentle joy of our day-to-day existence, that sometimes seems like the hardest part.

No parent should ever have to feel like this. So on MPS Awareness Day I lay out my heart to you and say we need funding. We need research. We need a cure.

(Photo from 2018. I think we all need a Pudding smile after that.)