I need to become a Super Mum…. I don’t quite know the steps to get there but I definitely need to do my best to achieve this title! Yesterday was one of those crappy days when everything fell apart and all I did was cried… Ok from the start, here we go –
It’s been pretty busy with different appointments for Cayla lately and we are currently doing some serial casting. I am not a fan of the casting as I feel that we can’t do much but being at home. It’s important that she doesn’t get any sand/dirt in the cast plus not being in contact with water. Cayla herself is pretty chilled out about the cast and don’t seem to mind it that much. I do however have to carry her a bit more as she doesn’t always feel like walking, especially when the cast is new and rock hard.
Yesterday we had an appointment with Andrew at TCCP, he comes to the centre twice a month to do moulds and makes AFOs (foot splints) for anyone who needs them. Cayla has so far had a fixed AFO on her left and a hinged one on her right.
He examined Cayla’s feet and observed her when she was playing and walking around on the floor. Her feet are pretty much flat on the floor now post botox and after one week of casting. However, he felt that she definitely needs two AFOs as the way she puts her feet flat on the floor is to collapse the middle part of her foot blah blah blah. He explained is so well and there is no way that I can re tell this story without confusing you all.. You can read about AFOs, dorsiflexion, plantarflexion and how it all works here.
Anyway, in the end he recommend two fixed (solid) AFOs but with a review in a couple of months time. So why am I so upset about this?? Well, I didn’t fully understand the complexity of the use of AFOs until now, it’s not just about keeping that prolonged stretch of the muscles in her legs and to keep her feet at 90 degrees.. It’s much more complex than that. The AFOs have a very important role in keeping Cayla’s feet in the right position and also supporting her feet the right way. An AFO works just as braces on teeth, by applying pressure to the structure of the foot and ankle. All to ensure that her feet, legs and hips are growing as normal as possible. Andrew explained it so well and I trust that he knows exactly what he’s doing but for me, who see Cayla walking, running and climbing every day I just want her to have hinged foot splints. They would just give her so much more flexibility when moving around than the fixed ones and I think I was hoping that we could remove the right AFO all together and put a hinged AFO on her left foot… After a lot of thinking and crying in the car on the way home from the centre yesterday I realise that I still have a bit to conquer when it comes to accepting that Cayla has got cerebral palsy. I just want to fix her problems and trying my best with different methods and therapy to do so.. but about every six months we are back to square one again… The botox is wearing off, time for new injections, more serial casting, new AFOs, more stretching, more physio exercises, more elektrodress.. It’s just an ongoing battle! I really can’t fix Cayla, what she has got is here to stay.. It’s a difficult thought and makes me quite upset thinking about it… I worry so much about her starting school next year, her speech, saliva control etc, it’s really doing my head in at the moment… So yesterday I cried, and cried and cried… Crying is good yeah…. it’s part of healing or moving forward isn’t it?? I realised that I don’t really have anyone that I know well enough to talk to about all this, my friends who’s reading this, don’t take it the wrong way.. you are great! But there is no way you could possibly understand how I feel and that is ok. I did however speak to one of my friends last night who said something clever ;) One step to move forward in the right direction would be to talk to other parents in the same situation and I agree. Need to work on that.. and maybe organise at least one catch up or playdate before I decide to ring them up and cry my eyes out….!
Back to Super Mum – I need to move on from the ‘I must fix Cayla’ stage to ‘I accept this crap’ stage and become a strong and happy mum for Cayla. I want all the therapy we do for her to be easy and nothing that we have to worry or cry about. I will go to every appointment in the future with an open mind and hoping that with time, all of this will eventually just become our normal life.
Any suggestions on how to become a Super Mum and how to move forward in this please let me know! :)