Tag: grief

A letter to Hunter Syndrome

On By huntersmumIn familyLeave a comment

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?

Life and Death

On By huntersmumIn family, medical19 Comments

*Trigger warning – death and loss*

I’ve never really been a big fan of New Year’s resolutions. Why try and set yourself up to fail in the most miserable dark time of the year? (Eternal optimist, me!)  But maybe this post does fall into the ‘New Year, new you’ sort of vibe, though the subject matter not so much.

When I set up this blog I promised myself and my readers that I would always be honest about what we’re going through and how I’m feeling. I didn’t think it would be fair to hide any aspect of our journey because the whole point of it is to share, so that hopefully others on the same path could recognise their own problems and feel a little less alone.

On the whole I’ve stuck with that, but there’s one area that I’ve often skirted around and avoided tackling head-on. Mostly because I was scared about how people would judge me after reading it. I’m still scared, but a conversation I had recently made me realise that I may not be the only person who has had similar thoughts on this topic.

I think about death quite a lot. You tend to when your child has been diagnosed with a life-limiting condition. (I never quite understood the family member that told another MPS parent that they ‘focus on death too much’.)

But of course death is never a simple subject to touch on. I’ve never lost anyone very close to me. Grandparents and friends, yes. But not a parent, or partner, or child. So I can only imagine the pit of grief that swallows you up after it happens. I know it can never be easy losing a loved one, whether it is fast or slow, expected or not. And I hope I will not offend anyone by what I am writing here. But it feels particularly cruel to face a long, slow decline for someone you love more than anything.

So here goes. Deep breath.

I have sometimes wished my son would die.

Not now. Not while he loves life and embraces it with such obvious relish. But if I could choose, I would choose a swift and merciful end for him rather than losing him bit by bit. And in my darker times I have wished that it was sooner rather than later, just to take away the agony of waiting for it.

One of the very first things I ever read about MPS when Pudding was diagnosed was the Wikipedia page. It refers to a case from 2004 when a father suffocated his 10-year-old son who had Hunter Syndrome. That has haunted me ever since. Never in a million years would I do something like that to my darling boy and this is not a blog post about mercy killing or euthanasia*, but I guess I understand part of why he may have done it.

Faced with the prospect of my son spending years losing the ability to talk (which he mostly has done), to walk, to swallow; thinking of him having more pain as his joints degenerate; knowing that he may be hit by seizures and by the end may not even recognise his family… there have been times where I’m certain I could not go through that. Maybe that makes me selfish, putting my wishes foremost.

Or is it? Is it selfish to hope that your loved one, whether 7 or 70, can live without pain, physical or mental, and can die with dignity? The reason we have these thoughts is because we love them. And love makes us want to end any suffering.

As with anything I write in this blog these are my own thoughts and emotions and I’m simply offloading. I may be in a tiny minority but I’m going to feel better for having said it. My thoughts may change, as so many things I’ve written about have done. Maybe as his condition worsens I’ll be more and more desperate for him to cling onto life with both hands and never let go.

Right now, as I’m writing this, Pudding is clambering onto my lap with his tablet, resting his head heavy against my cheek, his warm bulk blocking my view of the screen and making it pretty awkward to type. I simply can’t imagine him not being here.

But I will always hope for the best for him. In life and in death.

Pudding in front of some greenery. He looks a little pensive or worried.

 

*I do happen to believe that an adult in their right mind with a life-limiting condition should have the choice to die at a time of their choosing, but know that this is a topic fraught with problems and presents a number of ethical issues.