Independent Study Unit
ISU (Independent Study Unit – sometimes also called ISP or Independent Study Project) just typing those words gave me the heebie jeebies. Remember those? You went to the library (what’s a library?) to research (sometimes, research meant meeting friends just to goof off). You opened encyclopaedias (what on earth is an encyclopaedia?) to consult the EXPERT on your intended subject. Then you spent countless hours at night crafting your research into words so that you could present all this to a teacher for grading. Welcome to our never-ending world. There are subtle differences with our current-day ISU, but the effect is the same. Research, research and more research. Up all night worrying about what was learned from the research. Try our best, in our sleep deprived minds to coherently summarize what we learned to our families and friends. Only to be reassured that: “Epilepsy studies are in their infancy”, “Doctors don’t know everything”, “Miracles can happen”, “You don’t know yet, so try not to worry” and one that gives us hope, and yet promises us very little: “My cousin’s in-law’s brother’s daughter’s best friend’s aunt, she had seizures…”
We read blogs, we read medical journals, we research foundations and support groups and every other imaginable point of contact to the one heartbreaking enigma in our lives. What good does it do us anyhow? It stresses us out even more by providing us with a glimpse into the shattered lives of families struggling through it. A Dickensian spectre of our future selves. And yet, days like today, when our little angel goes through yet another cluster, we find ourselves scouring those journals and blogs and foundation websites looking for a familiar pattern, a formula, something to make sense of all this chaos.
Well lookie here.. Here’s one now. The article is called, “Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy”. It’s Canadian, eh.
Chilling bedtime reading. So let’s move on to what’s been happening lately, shall we?
Pepper’s seizure count is now somewhere along the lines of 157 seizures. We were grateful to have 4 seizure-free days recently, only to be followed by a cluster of 5 seizures on the 5th day. It was kind of like her body saying to us, “Ha ha ha, you fools.. you thought you could stop me”. Despite the scare it gave us, she remains a very happy baby. She continues to smile through it all, and weather the storm. Her development is still behind and slow to progress, but we have finally been given an appointment to get started with therapy for her. Her appointment isn’t until February (these places have the worst waiting lists I have learned). Thankfully, she will be getting help in all the areas needed. Physiotherapy, Speech therapy, Occupational therapy and the like. Instead of being a hockey mom or a soccer mom, I now become a therapy mom. I won’t have the folding lawn chair or the bad attitude with me, but I will have the determination and the positive attitude to get us through. Go team Go!
In conclusion, I am not sure if anything in this blog entry made sense. It’s late, and I have been pulling one of my many all-nighters. Please go easy on me when you administer my grade.
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