It is only Talipes.


Boots and bar Hugo
So What? It's ONLY Talipes?

Yeah ok I hear you, It's only Talipes to you.

My son was only born with his feet curled up.
He only needed 5 weeks of casts.
He only needed 12 weeks of 23 hour a day boots and bar.
He only needs 5 whole years of Boots and bar for 12 hours a day.
He only needs to see his physio till he is 11 years of age.


When I was pregnant I felt like it was the end of the world, well until I was told he may have a severe disability like Edwards syndrome...
But then the guilt when he was born that he ONLY has Talipes. Thank god he ONLY has Talipes. I myself would even find myself telling people, well at least it is Only his feet; Like I should be thankful he has Talipes. I mean my goodness I thank god everyday that he is healthy. But Talipes itself is proving to be the hardest journey I've ever been on.

That whole sleep deprivation thing is awful, Listening to your baby pleading for his Bar off all night, its too fresh in my mind to even joke about it. (I spent all of last night trying to comfort H, I ended up in his bed with him) I don't think I've had much more than a few hours sleep if that.

But yes I totally hear you. It's ONLY Talipes.  Talipes can't be THAT BAD can it?
He's not disabled.
He can walk.
He can run.
IT won't ruin his life.
SO It is only Talipes.

But what if you had a Talipes baby? Would it be only Talipes to you?

To see your tiny baby at just 5 days old having both feet/legs casted would it be only Talipes?
To see your tiny 6 week old baby having to wear the huge metal bar & quite frankly ugly boots for 23 hours a day, would it be only Talipes to you?
Have you tried to cuddle tiny baby wearing boots and bar? well have you? would that be only Talipes then?
To have your 2 year old crying his eyes out at you for trying to put his boots and bar on to keep his feet straight. Would that be only Talipes then?
To not sleep after having your talipes baby waking every hour on the hour because he wants to take his boots and bar off for the last 6 months. Is that only Talipes?
If you were to stop treatment at the age of 2 years, the chances are the feet would relapse meaning more operations & casting. Is that only Talipes too?

There is no such thing as "It's only Talipes" I know Talipes isn't the end of the world. I know there are a lot of children going through much much worse than us. I think of these children & prey for them everyday.

But for me. Talipes is far from 'its only Talipes' Talipes has turned in to my life. And at times It's a horrible struggle. bedtime for children can be hard enough but adding boots and bar to bed time can at times be too much. The fight every night is the most tiring thing ever. I dread bedtime.
You can see HERE what our evening entails. *Please note it may make you cry*

This is my life. This is my son. And Talipes for us is far from "It's ONLY TALIPES" 
Keep your judgment to yourself until you've walked a mile in Hugo or my shoes...

He slept all night when he wasn't wearing his boots and bar.

4 comments:

  1. I agree wholeheartedly with you on every point. Im dreading david being hugos age as im pretty sure he will be the same. Xxx

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    Replies
    1. thank you - the positive with the internet is we have each other goodness knows what i'd be like with Happy Feet xxx

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  2. I know exactly where you are on here. Yes! it made me cry. We have gone past the boots and bars now but still have hurdles. Casts for 12 weeks, AFO's for at least 3 months. 6 months of new challenges for us and not sure if it ends there. One day at a time. One day closer to the end of treatment. I am here for you all the way xx Love Taz xx

    ReplyDelete
    Replies
    1. xxxxx Lots of Love Taz. so thankful I have you in my life.

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