There are many things in our house with Connie that can be struggles for us and for her. Here are five of our everyday struggles.
It might not be a surprise that Connie can’t use a knife and fork but Connie actually needs help with every single aspect of eating. We have to cut her food into small pieces for her to eat, we often feed her food to her and we have to watch for her choking. If Connie is eating independently, she uses a mixture of her hands and a small teaspoon to eat. If her food isn’t chopped into small pieces then she is likely to put too much food in her mouth and is at risk of choking which has happened a number of times. Someone always has to be sat with Connie when she is eating – to leave her alone is dangerous.
Connie has to be dressed and undressed every single day because she cannot do it herself. This extends a lot further than just the basics of getting dressed. Connie can’t do zips or buttons, can’t put a coat on without help, can’t put her hands into mittens or feet into shoes. Her laces have to be tied for her, her trousers fastened for her, her bra strap pulled up for her when it has dropped down her shoulder. Her struggle everyday includes everything and it is so time consuming but it is something we have to factor into our days.
Connie chats away constantly but there is no denying that she struggles with her speech. From living with her 24/7 we can understand about 90% of what she is saying. The other 10% is a mixture that leaves us trying to guess what she is trying to say and her getting frustrated trying to show us. This then escalates when Connie is out with people who don’t know her as well as we do – we can only imagine how hard it must be constantly trying to explain yourself and constantly being misunderstood.
I’m sure this one looks random in our list but it really can be a struggle every day for Connie … especially at birthdays or through winter! Connie can’t blow her own nose so when she has a cold she is totally dependent on us. We have to either watch her to see if she needs it to be blown or wait for her to ask us to blow it for us. (This is usually her leaning backwards and pretending to blow whilst we try and help her as much as possible!) It then moves on to hot food – Connie can’t blow on it to cool it down… that’s up to us. Then we have candles, especially birthday candles, which Connie struggles with every single year. It takes numerous attempts ending in someone secretly blowing them out whilst she keeps trying!
5. Getting Up
It is becoming more and more noticeable that Connie is struggling to get herself up out of seats. It doesn’t matter whether it is the sofa, the dining chairs, the seat in the car – she finds any seat difficult and obviously the lower it is the more she struggles. Linked with Rett Syndrome, she is losing strength in her muscles and we are always being told that she has to ‘use it or lose it’. So we have to stand by and watch her struggle and try to not give her any help or lift her which feels so cruel but will hopefully be better for her in the long term. So the next time you see us in the car park stood by whilst she can’t get out please don’t think we are being mean! 🙂
We hope this post has let you have another little insight into our daily life and just how intense it can be. Massive thank you again to everyone who is liking and sharing our blog – it means so much! See you Friday!