I am writing this voyeuristic blog in April, to be published in June. Why? Because I am hoping I will get use to the idea of people (or strangers) seeing a bit more into my life as a carer/mum to Abbey. My relationship with Abbey is different to my boys or my journey as a mum. It requires so many different tasks and even emotions.
I rarely, and I mean rarely, share this information as the general person cannot relate to it. Its not their fault, its just that my situation is uncomprehending, unless you live it for a week. I don’t expect people to relate to my situation, not at all. I don’t expect any sympathy or special treatment. At the end of the day, all I want is to be treated like I am a normal mum. But when I do share, it is so evident from their reactions and comments, that thinking this is normal is very naive and even limiting myself to grow. Strangers become supporters who cheer me from the sideline. It is that which I have felt the most since starting Apikali, and as a consequence these supporters are asking for more stories about my life with Abbey.
So lets start.
A day in the life of Abbey is 24 hours. There is no off time, there is no relaxing when she sleeps. Even when she is not with me, either at school or at home with dad while I travel the country promoting cloth nappies or eco living, shes always with me. My mobile is pinned next to me every hour of every day. Did you see it in my back pocket at the most recent Expo?
You see, Abbey has uncontrolled seizures that can last 10 mins on average. At the moment (in April) she has about 5-7 a day/night. Any one of those seizures could turn into Status where the seizure does not end for a very long time (usually about 2-3 days), she has to go to emergency or its her last one. And that’s just her seizures, dont get me started on the random sprukes or other medical issues! These I will share all in good time.
Her seizures are the worst part of her condition. They are unpredictable, forever changing and cause the worst conditions for her.
But out of all of this I work hard to make life as ‘normal’ as possible. Its not easy, its really hard at times. It takes a lot of energy, broken sleep, being on high alert most of the time and never tuning off her needs.
Now I am coming to the end of this first installment of this new series of blogs. It wasn’t quite what I had intended it to be. I wanted it to be sweet smelling and full of possibilities, but rereading, it really shows dead ends and high stress.
My first impulse is to rewrite it, but that would not be true to my supporters. So here it is, warts and all, I suppose?
But don’t feel sorry for me, I know full well this situation is absolutely crap (excuse the french). But its all I have, its all I know. I embrace it fully. It presents its challenges and really low points. But the best is always yet to come. To see Abbey walking in her Walker, to see Abbey smile, to know Abbey recognizes my footsteps coming into her room and pretending to sleep to get cuddles, is priceless. Its worth it.
I don’t expect more (I did, I mourned and I still do at times), so I am not disappointed. But those were my dreams, not Abbeys.
So there you go. What do you think? I would love to know your thoughts. I do hope though that you wont share negative thoughts. I dont need them, and that is one boundary I hold too. I need a lot of positivity in my life and a lot of evidence that life is awesome. Thats another blog though!