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Finding the positive, because I have to.
Over the past couple of weeks I have been making a conscious effort to recognise the positive in my life. Some days that isn’t too easy. For years I have allowed negatives and set backs to colour my...
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See the child, see the family. Forget about the condition.
What do you love to do? Is there something that really defines you, the sort of thing that other people would say, “oh yes, that’s really them”? Yesterday I was talking to a 12 year old boy about...
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Welcome to Friday.
Friday morning and a return to normality. My youngest woke like the lark, happily unhindered by inflamed eyes or any other problem. Fortunately she is quite happy at the prospect of returning to...
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Round and round it goes.
It is Tuesday morning, the house is empty save for Rosie and I. I have time to savour some breakfast before getting on with the day. My mind, however cannot be still. Following a night of fitful sleep...
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Lets sit together.
Every now and again I get the most excruciating headache, the type of thing that just stops me in my tracks and makes me want to do nothing else except sit down in the dark and close my eyes. Very...
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Plans change
It’s pretty easy to make plans but sometimes you have to be open to them changing. This evening was supposed to be respite for our youngest, yesterday I received a call to tell me it would have to be...
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No one is feeling it today.
The rain is still raining, my cold is still in full force rendering my speech almost incoherent at times. Actually for the past week my voice has matched my rather mumbling brain. I would grab any...
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Sleep, I remember that.
One of the most challenging aspects of parenting is lack of sleep. Those seemingly endless sleepless nights take a toll on our energy, our drive and clear-headedness. It can be pretty hard to think...
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It’s a style statement.
She knew what she wanted when she returned from school. Her top, a pretty shade of jade was not to her taste. Instead she sought a top of pink, long sleeves on this rare for this year sunny day. A...
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Tears and singing.
Last night, from nowhere, tears appeared. They overran her eyes and streamed in rivulets down her cheeks. I sat beside her, upset to see her so distressed. Without thinking I, in mother mode said,...
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Ready for respite.
It is the most glorious Friday morning, the murk of yesterday has passed and already the promise of heat is building. My husband has gone off on one of his regular work trips to Aberystwyth. I have to...
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Time to take a chance.
Last Thursday my youngest had her annual appointment with her neurologist. During last year’s meeting it was agreed that if all stayed well we would review her medication. As of now my daughter is 22...
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Countdown begun.
During the second week in July my youngest had an appointment with her neurologist, the idea was to look her medication with a view to weaning her off one of them. My daughter takes three different...
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… and relax.
During the week I make a point to take a shot of my first morning tea or coffee at work. I like to recognise the moment of transition from my time to work time, from a rather more leisurely state to...
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A check up and a miracle.
Over the years we have made the journey many times to the hospital. Thankfully in recent years most of these trips have been for check ups and consultations rather than the previous mad dashes when we...
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All organised, until I’m not.
This week I have been dealing with such complex issues as, what time is it really? am I sure I don’t have to go to work today? and, remember, when Saturday comes your holiday is over, it’s a work day....
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Weekly round-up.
Following the many postings of November it was my intention to take the weekend off from blogging and get ready for December. Then my youngest had a nasty seizure on Sunday evening while at respite and...
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Nourishing.
At school today she likely had a seizure. They rang home to tell me. I am so glad I made this lasagna this morning. I cooked early to avoid the time pressure of having to get it all together while she...
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Watching and caring.
Sitting tight, holding hands. Today is about watching and caring and praying that yesterday’s seizure is not repeated. Our plans for today changed. 15 stayed home from school, I stayed home from work....
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Trying to get her seizures back under control.
I could tell you about the headache, the constant pressure at the front of my head. I could tell you about the heaviness that sits palpably on my shoulders. I could tell you about the ever-present...
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