Middle Age

My son is as old as me.

Not chronologically of course – he’s eight and I’m 49. But the other day I realised that soon he’ll be nine, and in Hunter Syndrome terms that is getting closer to being old.

One of the blessings of being in lockdown again is not having to do the school run with T. Normally I do enjoy it; strolling along past the little lake, chatting about Minecraft or Pokemon or Last Avatar. Sometimes, I walk a different way which means I was more likely to see Pudding’s mainstream classmates – children he’d still have been in school with if MPS had not come into our lives. For a long time after he moved to his fabulous specialist school the obvious differences between them stopped bothering me. I stopped comparing him to them and wishing things were different. But last term the negatives began to creep in again. I would see them zooming along on scooters, so tall and growing more independent. And yes, it gave me a pang knowing that they would soon be walking to school by themselves, that so many possibilities stretch before them.

They are growing up but are far from old. Whilst Pudding is more like me.

I groan now when getting up off the floor. Pudding will no longer bend down to pick most things up off the floor (a tempting shoe to throw being one exception). I can hardly see to thread a fine needle like I used to. He is finding it more and more difficult to judge depth when stepping from one surface to another.

But while I know I’ve got years ahead of me before I am done with middle age, I don’t know about Pudding.

In the MPS world birthdays are scary. A birthday doesn’t just mean another year older. It means another year closer to old age. When a life can be cut off before adulthood, when is old age? 15? 13? 10?

I don’t know. And I don’t want to find out.

6 thoughts on “Middle Age

  1. Kristin Horner - Smith

    That is something I think a lot about myself and our son is only 5. I want to stop time when he does something like look me in the eye because I know how rare it happens. We are two year into our MPS journey with our son but the changes in him have been so quick I want to hold off every birthday.


    1. huntersmum

      It’s tough. Actually it wasn’t that long ago that I wrote about stopping time (It’s the post called ‘Time’ from July) in quite a positive way. But I find that emotions tend to come full circle quite often, and things I have dealt with rear up again…. But that’s ok – a normal thing we have to deal with. Much love to you and your boy. xxx (Are you connected with other families on Facebook, etc?)


      1. Kristin Horner - Smith

        Hi, no so far we haven’t connected with other families outside of the few we met while Visiting Manchester hospital for his first treatments, but we all finished at different time so haven’t seen them since. To be honest we have spent the time adjusting to hunters life and what that has meant for our son and his brother and lastly us. X


    2. That is something I never thought about with my daughter who was also MPS. She passed on the 5th July 2019, three months shy of her 25th Birthday. I think from all our perspectives, we all believed age or numbers of years lived was never going to be the issue (as you can see from her YouTube video) but how she lived those years. Oh how wrong we were and maybe our grief might be very different now.


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