I am often asked how things are at home. Is Ava ok? Many of my 'special' friends will know just what I am going to say here.
Its a very loaded question for us mums who have poorly children and a difficult one to answer. Do I give the long answer, which many really don't want as it contains the truth or do I give the automated short response of - everything is ok, she is fine?
I want to tell the truth, I really do, but so many people don't want the truth. They want the veiled answer of the world is fine and we are ticking along nicely but then even the short answer is loaded! Yes all is well but not in the normal sense of all is well. We aren't in hospital but my daughter still has 30+ seizures a day, can't see, is severely delayed, still can't sit up, is fed through a tube, needs therapy every day, has multi pieces of equipment for sitting, standing, feeding - so yes all is well!!!
The long answer, well I could write war and peace here. Many a time I have actually started to tell the truth of the situation and eyes start to glaze over - after the first sentence isn't - everything is ok - I kind of, well loose them. If you asked me how things are today and I told the truth -
No everything is not fine. Ava is on the Ketogenic diet and....... see I have lost you already. But seriously all is not well, the Ketogenic diet is having an awful toll on her body, she is constipated which means her seizures are worse and needing rescue meds. We are looking to increase the movicol to help the situation - giving her food stuff to help is out of the question, the diet is very controlled. I tested her ketones and they are very low today and our news from the EEG is that it isn't doing anything to improve her brain scan so my thoughts at the moment are what is the point? We were given melatonin to help her sleep and it isn't working - last night she was up most of the night with the exception of an hour or two. I have this huge problem to solve and my brain is so foggy from lack of sleep. Guess who is asleep now though!!! You guessed it - Ava.
Therapy was cancelled this morning because she is so jumpy and there is little point getting her to try to make connections when she is like this. My heart is breaking all the while having to stand by and watch whilst being so helpless. I like to be in control - everyday I am not and that is hard. It is only 10am and that is my truthful answer to how are you all today!!!
The short version - we are fine, thanks.
