I’ve been contemplating about how to write this post for a couple of weeks and honestly, I’m not sure how I feel about today. Six years ago we learned Kaleb had Sandhoff's Disease, it's been six long years since we learned our sweet little boy had a terminal disease. I remember how I felt then, just like it was yesterday; but I don’t know how I feel now. Maybe numb is a good word, the anniversary of diagnosis day doesn’t carry the same sting that it did back then. From
March 19, 2010 until October 3, 2012, l lived each day in fear. The weight of this disease was a heavy burden for all of us to bear and I can’t even fathom what it felt like for him. Just the pure stress of wondering every night, before I fell asleep, if he’d still be alive when I woke up was enough to make me feel like I had aged a million years. The mental anxiety caused by that fear, coupled with the added stress of trying to figure out how to manage his symptoms and keep him comfortable, made those two and a half years feel like fifty years but at the same time, it felt like only days. Back then, the anniversary of diagnosis day was a reminder of what was to come; now it’s just another day without him, another day to remind me of why he is no longer with us.
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