First Casting…
We had delayed Amelia’s casting for her feet, as we weren’t sure if it was the right thing to do for her. Our physio team had met Amelia back in Addenbrookes NICU and said that the talipes was nowhere near as bad as we had thought and would have only taken around 4 casts. This was such a bittersweet moment as we had been so worried about her little feet during the pregnancy, but what we would give for it just to be her feet now. All of that worry and constant panic about her feet felt so trivial now.
Paul and I had many conversations about correcting her feet, I was very on the fence and Paul wanted to try. For me, I felt it was why put her through all of these appointments when we know she is never going to walk, why not just enjoy her little curly feet.
A week after Amelia came home we went to Addenbrookes for a consultation with the physio team. Paul was called into work so I had to do this one alone. This was the first time Amelia and I had been out on our own since she was born. We hadn’t been able to do the ‘normal’ mum and baby things, like groups and coffee dates etc. We had always either been in hospital or going to one.
I was really nervous going alone, but it was almost like a bonding session we needed. I love my girls more than life itself, but I have always felt guilty for Amelia. I feel like she missed out on so much bonding time with me. We never got to have those endless cuddles in bed, I never got to breastfeed her and her have that need from me. Every time I felt that we were bonding she would get taken back into hospital and it would become that little bit harder. This time it was just the two of us, back to where we first met. I had everything we needed and had her pump bag loud and proud on her pram for all to see. We went to see our physio who informed us that Amelia’s feet had got tighter and she would need a few more casts than they initially thought. I knew this would be the case. The physio said they had a space that day to start the castings. I quickly thought about it and said yes, why not try it today? I called Paul and he was happy to go ahead as long as I was. I thought we could try it out and see how she gets on. I went to the coffee shop to wait for our appointment.
Sitting in that coffee shop was the first time I ever had to deal with someone I didn’t know commenting on Amelia. This lady was lovely, she looked at Amelia and asked if her tube was there forever, I said yes and found myself sharing a bit more info than she was probably expecting. I don’t know if other parents do this, but you feel you have to explain why your child is ill rather than just say the minimum. We sat down and had our lunch, Amelia had her tube feed and I had a sandwich. I felt completely in control, for the first time in months. I had this, I felt strong like a lioness, protecting my little cub. I didn’t care that people could see how I fed my baby, I was just proud of us both. After an hour we went into the casting room, and Amelia was an absolute angel. She was so well behaved whilst all of this casting and plastering was going on. I met the Orthopaedic surgeon very briefly (as they were not expecting Amelia to be casted that day). I remember them all looking at me (that same look that I keep getting) because I was talking about my child’s life expectancy so calmly. It’s something that I have learnt to deal with and talk very openly about. The fact that this has happened to Amelia is awful, so the best thing I can do is be as prepared as possible and hold myself together as much as I can. I do not want Amelia and Penelope to constantly see me crying and upset. I want them to remember their childhood as fun and as loving as possible. Of course there will be emotions and I want them to know that it’s ok to express them and get angry and upset. I just don’t want my children to sense my sadness all of the time.
The orthopaedic surgeon asked me if I was ok to speak frankly with her. I of course was. We spoke about knowing that Amelia will never be able to walk. This is something that we have accepted and now we want to give her the best life possible. The surgeon said that they would be able to correct her feet so she would be able to put shoes on.
The casting was almost done and Amelia started to get very uncomfortable. Whilst I was watching her go through this, I started thinking why? Why am I putting her through all of this? Amelia has so many appointments and specialists that we are constantly in and out of hospital, do I really need to do this to her? To be honest I really don’t care if she can wear shoes or not, I just want her to be comfortable and happy.
We got home and she was coping really well with the casts, even lifting her legs a tiny bit. I am constantly amazed by this beautiful child. She never fails to make me believe in tiny miracles. Paul and I thought that whilst she seems happy with them, we could go ahead with the castings once a week.
Then…Covid-19 happened !!
It was about a week before the lockdown started and we were was is in the midst of the uncertain. We thought it would be really silly of us to take Amelia into hospital when she is so high risk. I spoke to the orthopaedic department and the consensus across the board was to stop. It would be more detrimental to Amelia’s health to be in and out of the hospital once a week. So Paul soaked the casts off and set her little curly feet free. I was shocked at how much they had straightened after a week. They have now gone back to how they were, and we are still undecided on whether we should carry on or not, as it means we will have to have 2 casts a week.
As a family we went into lockdown around a week before Boris announced ‘stay at home’. It’s been tough but it’s also been lovely as Amelia hasn’t had any hospital stays for 4 months. She has also learnt to grab her feet and play with them, and that is extremely cute.