Finding our normal - casts

By Laura | March 17, 2019

Toes poking out through ponseti casts that were used to help with arthrogryposis.

It’s been 8 weeks since I sat nervously, but excitedly, the night before Ethan had his first set of casts. He was to begin the Ponseti procedure, which is primarily used to correct talipes, more commonly known as clubfoot, but for Ethan it would also help to correct the extensive contractures of his knees as well as his feet. He would begin the process of serial casting the next day and would have to have the casts changed once to twice a week. I was excited to be moving forward and to see how his legs and feet were going to change. But I was so nervous. How was he going to cope with these heavy casts on his legs? What was it going to be like for him having them put on? How would he sleep? Would he still be his usual, happy, smiley and chatty self?

This visit, Ethan and I travelled with Ethan’s Auntie Claire. We had decided to travel by train; Ethan seemed to prefer it much more than being cooped up in his car seat for over two hours. I can remember Claire and I happily chatting the whole way, but as we began to approach Chelsea and Westminster Hospital, I was struck by that same nervousness that had been flooding me the night before.

Having the casts put on wasn’t much fun. Ethan really hated it, but eventually tired himself out and fell asleep whilst the second cast was being finished. It was hard watching him scream and not be able to calm him at all. I guess my presence there would have been reassuring to him, but I did feel so useless. We were taught different ways to hold him, what not to do and what exercises and stretches we could do now with the casts on.

As we left, I can remember thinking that it wasn’t as bad as I had thought. Ethan was asleep, so I thought that perhaps he was all ok. But it wasn’t really. He woke when we reached the train station, and cried inconsolably. He was so difficult to hold and I wasn’t sure if I was holding him properly. The people around us in the waiting room must have been staring or just desperately hoping that the screaming would stop, but I didn’t notice. I just sobbed too. Really sobbed. Again, I felt so helpless, however I was also hit with such a feeling of unfairness. This all just felt so unfair. Not just the casts, but everything. Why did my tiny baby have to go through all this? It wasn’t quite the journey we thought we were going to be on when we knew we had a little one on the way!

Finally, we arrived home and that night was pretty unsettled. Ethan woke most hours screaming, but would eventually calm down with a cuddle. The next day I had decided it was a ‘stay at home and have lots of cuddles’ kind of a day and Ethan slowly started to settle and get used to his new heavy and hard legs!

I still struggled though, and just felt a bit low about it all for a while. That week I must have played and worshipped with the Bethal song ‘Raise a hallelujah’ a thousand times. The lyrics that I continued to repeat over and over were;

I’m gonna sing, in the middle of the storm
Louder and louder, you’re gonna hear my praises roar
Up from the ashes, hope will arise
Death is defeated, the King is alive

I wouldn’t let the current situation dampen my faith. We felt like we had been living in a big storm for so long, and this whole week had felt like another big crash of thunder had roared, but we would still trust and praise Him through it all.

Over the coming weeks, everything slowly started to become normal for us all. Travelling to London twice weekly with a baby became normal. It was normal for Ethan to have such heavy legs. We found a new normal when holding him. It was normal to watch him scream each time his legs were recast, but I quickly learnt that he would calm down afterwards, because the feeling of the casts were just normal to him.

It wasn’t all easy; in fact far from it. There were some things that were so hard, for example seeing so many of our friends babies wriggle and sit up, be held so easily and grab hold of toys was all so hard, but we had found a new normal for us, and we were seeing progress in our little hero.

Soon, i actually really started to look forward to the hospital trips with excitement. We were always welcomed so warmly by the team who worked with Ethan and I loved seeing how they interacted with him and how he greeted them with his precious smiles. I couldn’t wait to see how his feet and legs had improved - and they really did improve so quickly. It made it all so worth it.

Ethan was always a complete star! Every trip I felt more and more proud of him. He travelled so well and he took everything in his stride. He cried, yes, but he bounced back and he charmed all the ladies with his cooing and chuckling!

Now I sit here again, the night before another trip, feeling that same nervous excitement. Tomorrow Ethan will have his casts taken off, but this time they will be replaced with boots and bars. I wonder what amazing progress he will make with these? However he copes with them, however we are allowed to hold him, however well he does or doesn’t sleep with them, I know it won’t be long before we find another new normal for our family.

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