*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.
*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.
A Hunter's Life 
Nice piece
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From someone who has lost their brother to Hunters and is a carrier, this was an enlightening piece. One thing I would like to say is that as his sister, I was the only one he allowed to take off and put on his glasses. For everyone else he would wriggle his head. Even at the end, although it felt he did not recognise us, he kept his head so still for me when putting on his glasses. That’s when I knew he was still in there and that he knew we loved him. Live life to the full yourself to give your son the best possible life and that’s all you can ever do. Great blog.
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That’s so beautiful. Thank you for sharing. (Just tried reading this out to Hubby, and couldn’t cos my voice cracked too much.) xxx
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Such a difficult conversation to have to have; difficult feelings to try to process. Really feel for you and others who are in this situation. Unbelievably painful xx
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Thank you, Steph. Appreciate your kind support. xxx
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Sally your thoughts often come I to my mind . Having a lot to do with other family’s i see what they go through , some crumble,some have their faith to hold on to . I often look into myself not been a religious person and think how I will handle this . As pudding is, Harley is full of life and makes me smile every day . I feel guilty that he is on a trial and see others continue to decline . At the moment I enjoy my son and try to help others best I can (it helps my mind set) what the future holds is anyone’s guess .
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Absolutely. (And I also know that feeling of guilt when others aren’t on a trial (less so now, as he is not doing so well on it). You’re an amazing family and do so much for others. Much love xxx
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Beautiful and brutal and I understand and love the honesty x
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Thank you for sharing… I totally recognize myself on this… it’s hard to assume this but sometimes it does cross my mind…
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Always good to know that you’re not alone.. xxx
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I think it’s great you can share your honest feelings. I think it’s helpful to know the real thoughts going through a persons head x
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“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.”
Bravely and beautifully written as always.
Having watched my dad die slowly suffering from emphysema and now 8 years in watching my mum fade with Alzheimer’s, I totally empathise with your feelings. I never felt the same with my dad as he had all his faculties and could wish it for himself (I just had to be a strong person to see him struggling to breathe).
But with my mum, yes I have felt the same. The person she was died about 3 years ago but she still exists.
I think most of us would choose a swift end to our loved ones if we could (only if they were suffering of course!), but his beaming smile tells us all that he’s loving his life now so whatever you’re doing, you’re making lovely memories for all your family x
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Thank you! I know it won’t apply to everyone, and not even to me all the time, but it’s nice to know that other have felt the same way.
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Beautifully written Sally. And echoes what I have been thinking about ever since we received Lilia’s MPS III diagnosis last June.
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Thank you. That sort of comment always means a lot, and really cements why I continue to write.
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It is very brave and hopefully therapeutic to open up in such a way. I don’t feel quite the same as you but value the fact that everyone is entitled to feel and deal with their own problems in their own way. I try very hard and fail miserably when facing and ignoring the plight of my grandson Rupert (Hunters severe). I do know that I won’t know how I will grasp the enormity of the situation as he deteriorates. Will I think more of him or myself and at the end of the day (surely I will think more of him but what does that entail). Anyway, The decisions belong to his mother. I will continue to enjoy every second that I have with my best and beautiful friend at the moment.
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We all deal with things in very different ways and on different timelines and that’s fine. You’re a very caring grandfather and that’s what Rupert needs. Thankfully him and Pudding never have to know all the emotions we struggle with and can just carry on being the adorable troubles they always have been.
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We are in the same boat, but we hope the best of health will come to kids.
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Thank you, and wishing you and your family all the best.
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