life – A Hunter's Life

We’ve been together a while, you and I. And like any relationship we’ve had our ups and downs. Well, quite a lot of downs if I’m being honest. I’ve written enough about your bad side for you to have got the message by now.

I suppose you could call it a toxic relationship. In a situation like this, the thing people are supposed to say is ‘You should just leave!’ But I can’t. We’re stuck together for now.

It’s our ten year anniversary today. Did you know? People celebrate all sorts of dates for their anniversary. It’s not going to be a wedding in our case. But is it the day I first heard your name? The day we were informally introduced? Because of course, you’ve been around much longer. From the day Pudding, my youngest son, was born. The day he was conceived even – when a faulty egg wrote that error into his DNA. So there you were in our lives – uninvited, unwanted, unknown. I’d like to have met you sooner, had the chance to end our relationship before it took too much hold. But so far, I don’t have the power to change history. So I count today as our anniversary. The day that we sat in the consultant’s office and it was made official that we were now an MPS family. The first of July 2015.

Like I said, I’ve written so much about you. About how much I hate you, because there is oh so much to hate. You’ve taken so much from us – the ability to lead a ‘normal’ family life and the prospect of watching our son grow up and leave home to name but two. My 13 year old should be upstairs playing computer games with his friends, demanding endless snacks to fuel his growing body. But he can’t play computer games, he doesn’t have friends, he can’t communicate what he wants and he hasn’t grown since he was six and a half. Instead he is on the sofa next to me complaining about something that I can’t help him with because as usual once I’ve tried all the things that I can help with, I’ve no idea what it is. Maybe he’s just complaining about you. I don’t blame him.

I have tried to be fair, of course. I’ve also written about what you have given us. It was you that sculpted those features of his – the high forehead, his adorable nose – every inch of this body that I adore. You gave him that mouth that was so ready to grin and shout hello to the world (before you stole his smile away). You gave him those eyes that look into my soul and his soft curled fingers that grab mine to use as his fiddle toy.

What I’ve not really thought about much before is what you’ve done to me. Oh, of course there was the tsunami of emotions – the anger, grief, anxiety, and so on. You’re probably fed up of me going on about them. But without you, I would not be the person I am today. Ten years of knowing you has changed me in so many ways (and it’s taken a year on a counselling course with lots of self-reflection to make me realise that!).

I have my faults, I know. But there are the good things too. You have taught me to parent differently, for both my boys. You have taught me patience, with myself and others. Oh gosh, it’s such a cliche – you have made me stronger. Resilient, even. I know now that I can face the worst and make it through. I share my pain so that others might feel less alone. These days I even dare to admit I can be brave when I need to be. Most of all, I have become comfortable with who I am – the whole me, flaws and all. Someone who is never going to break the mould or change the world, but who can sit with pain and take pleasure in simplicity.

I really quite like this version of me. So when it comes down to it, I guess what I’m trying to say is… thank you?

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.)

A Hunter's Life

Tag: life

A letter to Hunter Syndrome

Ten years