Six years ago… Staying in bed for a week was a novelty.
Six years ago Chelsea and I stayed at home while the rest of the family went to the Philippines for a wedding. We stayed in bed for a week as she was very tired, had fever due to an unknown bug, and couldn’t walk much. We had great fun and she was really happy. However as the week progressed and she struggled more I had to I put her on an old sats monitor and she began to use her Bipap machine during the day as well as at night for the first time in years. By the time the summer ended we had bought our first wheelchair and realized that she was getting worse not better.
Six years later…
Chelsea requires 24/7 care. That means for the last six years one of us, usually but not always me, is with her every minute of the day. Now that her sister is older, I can leave them together while I do other things in the house, but we have to be with her at home all the time. No respite care or care assistants popping in to give her a bath or us a break. Just us/me. When she is on school holidays that means we often stay at home – all the time. It is week 5 of the school holidays and because I am not driving (health issue not ban) we are at home pretty much all the time.
Now I love my girl, love spending time with her, love her taste in movies and TV shows, although not so much this week as she is into Buffy the Vampire Slayer. We discuss characters and plots, debate motivations and next steps and ridicule fashion choices and vintage (90s for her) styles. I fast forward through bits that are inappropriate, put my hand over her eyes when she is embarrassed and explain situations and adult choices in language that a young precocious teenager can understand. We argue about whats good and whats bad have marathon viewing sessions and I constantly try and introduce her to new things. We love TV.
I even love turning the page for the first hour (read here). I love brushing her hair and feeling her face for her, endlessly scratching her nose and removing hairs that have escaped from behind her ears to tickle her face. Shaving your teenage daughters legs may not be your idea of heaven but I like it when she cares about looking good so doing her legs and painting her toenails then deciding what to wear are great things for us to do.
Getting her to eat has never been at the top of my great things to do with Chelsea list and never will be. In the hospital there was a time when all she would eat was gelato ice cream this summers choice is grilled cheese sandwiches ideally made by her brother who introduced her to them. She eats just not anything that I have cooked for dinner unless it is seaweed wrapped chicken.
The constant dichotomy of desperately wanting/needing a break and wanting /needing to be with her never ends. Stepping away from the bed, unplugging from her and her needs challenges everything I feel is my responsibility, and burden as her mother. I can’t make her better and that failure is overwhelming, so I have to try and do the only thing I can which is to make her life experience better.
and that is exhausting, Bone numbing, soul zapping, faith challenging exhausting. And I know at the moment I am failing her.
Our helper Pat was away in the Philippines and got back yesterday, so here I am now stealing a moment away from Chelsea. Reading and doing emails, organizing photos, celebrating Murray winning Wimbledon, dreaming, doing nothing. A holiday in my bedroom. Thunder and lightening is exploding around the house and the rain is pouring down so it is naturally cool, not the aircon cool of Chelsea’s room.
Bliss and a holiday from being a carer, if only for a moment.