I had such a busy week last week with one thing or another. Although I continued to think about the topic for my next post! So here it is!!
In the summer I attended a course called Solution Focussed Training. It focuses on looking at a problem with a solution in mind and letting the client talk in a way, where they help to solve the problem through looking at what life could look like if the solution was solved. One aspect to this technique is called the Miracle Question, so I have thought about what the answer to my Miracle Question might be!
In an ideal world, my miracle question might be to win the lottery and plough it all into research, or maybe to have my child cured, they would be miracles, fantastic ones, and ones that could be achievable in time. However, I think sometimes in life you have to set yourself smaller goals, so that you can move forward to bigger and better things. So when I look at Amber, although I would love for her to be cured, there are certain aspects of her condition that for me, are important to be resolved. So the answer to my miracle question would be, I concluded, for her not to have any more seizures and have normal brain activity.
My reasoning for this, is that this weekend a family member was admitted to hospital for a sudden onset of seizure-like activity. I have seen the most horrendous seizures in that last 6 and half years, and although the seizures of my family member are nowhere near as severe as what my little girl has experienced, watching them was the most heart breaking thing I have seen in a long time. Not because I witnessed the seizure, but more so, the shear panic that they exhibited, the fear, the feeling in their body, the terror of how their life might change. That was the worst! Watching a grown adult feel frightened and scared I started to think how my little girl must feel. Does she feel panic? Does she feel the same sensations? How does she feel when her heart is pounding? It breaks my heart to think that maybe I have gotten used to her having these seizures having dealt with them for so many years, I so wish she could tell me how she feels! Does she in fact feel frightened? Or, does she feel relaxed like some do that have auras? I will never know!
It seems incredible that all my family that have seen my family member have these seizures over the last couple of days, has taken them in their stride because they have seen so many from Amber. Life shouldn’t be like that, desensitised by something as so horrendous and devastating as epilepsy by a 6 year old girl.
November is Epilepsy Awareness Month, I ask you all to have a thought about these children living with terrible seizure disorders, likewise the adults, and the families that have lost loved one to Sudden Unexpected Death in Epilepsy (SUDEP), it happens daily, and anyone, anywhere, could experience a seizure in their lifetime. As I have seen this weekend, it doesn’t care whose life it changes!!