My Abbey is so beautiful. The long, brown, wavy hair. Her peachy cream skin. Her smile and infectious hugs. As my boys are growing up and becoming more independent, my time with Abbey is increasing again. I have started to take notice of what I think when I look at her, when I watch her.
When she is sleeping, which is a lot of the time, I am firstly looking for seizure activity. My first instinct is to be prepared for the next seizure. Its part of her condition. But if I stand and watch her a little longer, I notice her long body, and how she likes to sleep in tight positions giving lots of sensory feedback. It looks so peaceful and relaxing.
If I stand there a bit longer, I start thinking about her happiness. I am caring for her, first and foremost everyday, but I rarely get to think about her happiness. There is so much medical stuff to do. There are so many appointments she just has to attend with me. So I am always thinking of other aspects of her care, and not about her. I like this part of the thought process the most. I think she is as happy as she can be in any given moment. She is surrounded by people who love her, cuddle her and give her one on one attention. Abbey is just so lucky, that she gets it all the time. So yes, I think she is happy. The giggles, smiles and chattering are a good indicator when she is awake.
If at this point she has not woken up or had a seizure, I can think about her future. Which invariably includes me, but her future I can’t see. And this means my future I can’t see. I can easily picture my boys’ future and think about all the milestones…friends, sport, awards, first loves, education, first jobs, first car. Its easy. Abbey is different.
I never now if there will be a tomorrow. We really don’t know what to expect each morning we enter her room and greet her. We don’t know what to expect at the end of the day. Its such a contrast to my boys. For Abbey, I live in the present, the moment and enjoy that. No matter what that moment is, whether at the hospital, in a park or curled up in bed cuddling.
Its hard to switch between the two trains of thought, present to future and back again. Especially when I envision that future with Abbey. So for now, I make a plan of something I would love to do with her into the future. And while I am living in the present, I think about doing that activity with her. Right now, that future activity is a photo session for Mummy and Daughter by a professional photographer.
I love living in the moment with Abbey. Its toxic and exhilarating. Its hard and sad.
Abbey is beautiful. Abbey is my girl.