His eyes

It’s been a long day at hospital.

My back is aching and I am so tired. I go to bed but cannot sleep. When I turn out the light and lie down all I can see is his eyes. Red-rimmed and full of tears they look into mine and beg me to make it stop.

It was just a routine trip really. Our usual monthly trip to Manchester Children’s hospital for the clinical trial that Pudding is on. T came with us too as he really wanted to see where his brother has been coming for 3 years now. But as those who follow us on Facebook will know, we’ve been having a few problems with Pudding’s IV port – the one which we use for his weekly treatments. Towards the end of the day, we went down to Radiology to try and get a lineogram.

Pudding was already tired and we ended up having to wait far longer than we expected. I knew it wouldn’t be easy. He was hitting out in the waiting room. Shouting and hard to distract. He fought us as we got him on the X-ray table. We needed him to be still so we could get a clear picture but of course he can’t know this. He doesn’t understand.

So often his behaviour is physical  – being non-verbal he can’t tell us what he wants. He can take my hand and lead me to the kitchen cupboard to ask me for food. He can hand me his tablet to ask it to be turned on. He can throw things until I notice that his programme on TV has finished and needs to be turned over.

But as I stood at his head and pinned his arms down, he looked at me with those heartbreaking eyes. And I knew exactly what he wanted. It didn’t matter that he can’t talk. It didn’t matter that he has a severe learning difficulty. Clear as anything, he was saying ‘I don’t want to be here’. Speaking to my soul and begging me to help. And I held him down.

The lineogram couldn’t show anything anyway. In the time since it had been accessed the needle had come out of place. So we have to try again in two days time. He is now fast asleep, lying peaceful and unconcerned by anything. And I’m left here wondering what it will be like next time. Will he be in a better mood and will it all go swimmingly. Will he see the room and start fighting again? Will I need to look into those eyes again and tell him it will all be alright? Will I do my best to calm him when I’m close to tears myself?

At times like this all I want to do is whisk him away. Get him miles away from needles and x-rays and monitors and all the shitty implications of a medical life. Say goodbye to the hospitals. Live life in the moment and not think of the future. He should be in a field somewhere – kicking a ball, stroking a bunny, throwing stones in a river.

How can I ever know what is best for him? He’ll never be able to tell me whether I got it right. When the moment is past he doesn’t hold it against me.

But those eyes stay with me…

eyes

8 thoughts on “His eyes

  1. Sat with a tear running down my face. You know what’s best for him because you are his mummy but I know you will doubt yourself because I do too.
    I can’t even begin to imagine what it’s like for you all, we were diagnosed and dumped and sometimes I find that hard and other times I’m grateful xxxx

    Liked by 1 person

    1. huntersmum

      Thanks, Gemma. It was a definite wobble last night, but I do sometimes seriously question whether it’s the best thing to have all this treatment or whether we could ever approach a more ‘normal’ life. I know we’re in a far luckier situation than many, but whatever we go through as parents can be all-consuming I guess. xxx

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  2. Louise

    This is the most heart-wrenching blog I have read in a long time. I sat at my desk today trying to wipe the uncontrollable tears away from my eyes before anyone noticed. Beautifully writen blog that truely reflects your strength as a mummy facing unimaginable challenges. I am in awe of you, you are doing just fine – xxx

    Liked by 1 person

    1. huntersmum

      Sorry to make you cry at work. I almost didn’t actually publish it – just needed to write it to get it out my system and I worry that I write too much negative stuff. But I did promise myself when I started that I would always be honest, so…. Thank you for your kind words. xxx

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    1. huntersmum

      What I should have done was say no to the lineogram when I realised how tired and upset he was, and that I didn’t have his tablet. This morning when he was in a better mood and we had the distraction with us, it went SO much better! xx

      Liked by 1 person

  3. Hi Huntersmum, first of all I came your site because I googled ‘does MPS I hurts’. Because my brother died when I was 9, he was 11 and my mother told me that when I was 4 and because of her tough mom job and with saying ‘don’t forget every moment you share, remember it’ everyday. So I have a lot of memory’s, but so many questions what nobody can answer. And I am 26 now, read a lot hunter to be with him. But I never saw pictures of other children, I guess because I think it’s normal how he looked like. And I started to cry, because your boy looks just like the same as my bother. Only with light eyes. I’m going to read your blogs. With pain, but it will help me to realize more about the experiences he had. Which was completely normal to me that time. Thank you for reading. You are just that strong as my mom. ♥️

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    1. huntersmum

      Oh my word, I’m crying now. One of the reasons why I started this blog was precisely because I wanted other families to read and know that they are not alone. I’m honoured that you think this, and hope that you enjoy (wrong word, but hopefully you understand) reading.
      When Pudding was first having issues it was partly because of his ‘different’ looks that I pushed for diagnosis but it was a shock to see how like other MPS II boys he was. But also I find it lovely that family feeling I now have when I see others’ pictures.
      Love to you and your Mom. xx

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