Kara

“The hardest thing, I’d say, is the mental struggle. It’s physically exhausting of course, it takes a lot of energy to dress and feed and clean a 14-year-old toddler, but I think it’s got a bigger mental toll. We take care of her; feed her, bathe her, dress her etc. including changing diapers since she’s incontinent. But the mental stress of knowing how different your life, and your sister’s life is to the rest of the world is so incredibly hard. She is on the very severe end of a spectrum disorder called Koolen-De-Vries Syndrome, which means she can’t communicate at all. Her epilepsy means any time she could seize and potentially die, and that’s pretty hard to take knowing that the odds of your sister of living into adulthood are very slim. One thing that upsets me from time to time, sounds a bit strange, but seeing my cousins grow up can be incredibly difficult. In the 14 years of my sister being alive, she’s never spoke a word, or communicated in any way and has always needed assistance with pretty much everything she does. So, even little things like seeing my younger cousins learning to talk or walk or going to school can be so upsetting because it’s almost a silent reminder that those are things she’ll never do despite being 10 years older.”