Wednesday, 11 July 2012
So a long time since I updated my blog once again! I guess the positive is that when things are going well with Elin I don't feel the need to blog as much, so you can divulge from this that things have been going pretty well for our little Princess lately. For a while now she has only had sporadic seizures, has been doing very well in school (still struggling to sit in anything mind you!) and has generally been a smily, happy superstar. Just lately we had a scare, two seizures in two days. This in itself is not scary, we have seen it too many times for it to be scary. What scares me is the constant worry that it might signal something, like a spiral downwards for her..like last Summer/Autumn. That we might have to go back to bouncing in and out of hospital and wondering if things are taking a dreaded turn for the worst. After months of inactivity on that front you get a little complacent. You forget the constant gnawing feeling in the pit of your stomach and what it's like to live off your nerves. You forget what it's like for certain songs on the radio to reduce you to a heap, to jump a mile every time a phone rings when Elin is not with you. You forget the fear, the fear that this time things will not work out ok. You start to forget it all. Then she has two seizures and you're back there again. What do they mean? Will she have another one tomorrow? And the day after? Or are they one off's? What if she has outgrown her medication, can it be sorted this time/ How quickly? Can we plan anything, can we go on holiday, will she be ok? That's all it takes. Two little seizures remind you of how quickly things can change with Elin. That's what's scary. And hard. Luckily this time, it seems whatever was troubling her at the weekend has passed. I hope it has passed for another few months,I think we are due a nice family Summer break after last year. Life with Elin is sometimes an exercise in holding your nerve. Don't panic! Pray the status quo is maintained. The status quo being ordinary life, as ordinary as it can be, with no hospital dashes, no seizure and no illness to wreak havoc with my nervous system. That's all we need! The status quo of course in itself is not easy. There are still moments of finding yourself in a heap, still heart stopping ringtones, still nervous tummy's and still a great deal of fear, sadness and despair. But it's manageable. It's a manageable level of upset and sadness and hopelessness, because the fact is when Elin smiles at me none of that really matters. The times that are unmanageable, the times I feel like my ability to cope is ebbing away are when the smile does not come, when she is poorly, when she is sad. Not only unmanageable, but unbearable. For now we have avoided the abyss of fear, Elin is right as rain again. Let's hope we don't have to fall into it anytime soon. Let's pray for the status quo.
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