Anxiety

It’s probably not been hard to tell from reading these posts the points at which we’ve been the most anxious.

Immediately post op wasn’t much fun at all. Seeing Rhys looking incredibly weak and in a lot of pain I think it’s only natural to question whether or not you’ve just made a whopping mistake.

Even though we were assured that his recovery was well within the normal range the knot of anxiety in our minds only loosened as Rhys made progress.

I can remember the period before Rhys could walk. I obviously felt anxious about whether or not he ever would. It’s uncomfortable carrying that anxiety around with you all the time but it is quite motivating. You keep reading and researching as you try to find the therapy, the method, the ‘thing’ that will help. And as Rhys became more able so the anxiety slid away a little – and with it, some of that motivation went as well.

As Rhys is getting closer to his pre op ability you can again feel the anxiety passing. The realisation is though that we need to keep the motivation up. If Rhys is to get the most back from this surgery we need to get him back to where he was, and then kick on – and that will take a fair bit of effort.

We were reminded of that when we saw Rhys’ surgeon Dr Park yesterday for a post op assessment. He was pleased and impressed with Rhys’ recovery so far. We talked a lot about the stretching and the physio that Rhys will need to do to maximise his new potential (quite a bit).

Some of it isn’t going to much fun. Rhys has got these new splints to wear at night for the next 6 weeks (he’s waking again as I type).

The aim is to to stretch out his heel cords. Dr Park repeated his thought that Rhys will need to have surgery to lengthen these – that’s something we’re continuing to explore while we’re here.

We also talked about how the UK body NICE have changed their guidelines on the surgery being performed in the UK which is likely to have a detrimental effect (more on this in another post).

Dr Park said that Rhys’ progress will probably come in bursts over the coming weeks (I think we saw a significant burst last week) which means I’ll probably post here on a less frequent basis as we move on.

On the wall in Dr Park’s department are lots of photos of the kids he’s operated on. Given that we may not see him again for some time we took our photo to add to the wall at some point in the future.


And for the record Rhys’ Welsh rugby shirt was in the wash.

5 thoughts on “Anxiety

  1. Before you left for Rhys’ operation, I believe we chatted about “why we’re doing this”, “future outlook” … concerns generally. I read your blogs with so many questions but am touched by your honesty in each and every one.

    I feel as though the decisions made by us as carers (be it parents/grandparents/family) to children with CP (or any disability for that matter) seem heightened when something as major as this (SDR) is put to us BUT, nonetheless, we have to make a true and honest decision as to WHY we are doing it … and Rhys is your proof! It WILL take time for things to settle, for Rhys to come into his own, and there is much to be done to get him to where he needs to be. I would rather ask myself “Why are we doing this?” than “Why didn’t we do this?” We do what we have to as without you (his family) looking to his future and wanting for him to lead as ‘normal’ (used very loosely) and pain-free (FACT!) a life as possible, Rhys’ life would still be rich in love but lack in physical achievement and ability (to some degree) – you, his family, know Rhys better than anyone but he has proved (in my view, by reading your blogs/viewing your pics and videos) that although in pain, although tired, although (most likely) scared of ‘the unknown’, HE is trying for himself – surely that, right there, is proof that this WAS the right decision made for Rhys. How can a brighter and happier future for a child be wrong? It’s not … Rhys is showing you that right now!

    I, personally, commend you as a family for your strength, love but, above all, wanting so much more for your son … because it is right and it is HIS right!

    x

  2. Your all being so brave obviously Rhys but you two more so because as parents we do everything we can to protect our children from pain, I know you’re looking to the future all the time, stay strong and love to you all, Zoe xx

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