As November, which is National Caregiver Month, is coming to an end, I’d like to share this guest blog post written by one of Blair’s old caregivers. -Grey
I met Blair Chapin in January of 2015. I began to love Blair Chapin in January of 2015. I was not unique in my immediate love for Blair, to know her was to love her. She was irresistibly lovable! I think Blair began to love me a few months later once she realized I was good company. I believe that Blair’s younger sister, Grey didn’t begin to love me until many, many months later. For this, I applaud and admire her.
Grey was fiercely protective of her sister. She kept a close eye on me and meticulously oversaw all caregiver operations. She made it very clear that just because her mother had approved of me as a caregiver, didn’t mean she did! She would periodically walk into Blair’s room and critique the Barney tape I had chosen. “Blair doesn’t like this one. She’s not even smiling.” With Grey’s not so gentle remarks she helped me learn what Blair needed based on certain facial expressions or vocalizations.
Grey always made it clear (and still does) that I’m the least cool caregiver of all of Blair’s girls. By putting me in my place, Grey was displaying that the Chapin’s were not ones to be trifled with. Blair’s level of care was the most important thing in the world and she was not going to let me screw it up. At some point, Grey realized that I had been trained sufficiently and she let me become a friend and not just someone she had to check on. Being Blair’s caregiver came with so many perks I couldn’t begin to count. One of the best was being Grey’s friend.
From the moment I met her I was struck by her maturity, sharp sense of humor, and independence. While these are all positive and admirable traits, I believe they partly developed as a side effect of an unthinkable reality. As the younger sister of a child with a terminal disease, Grey was forced to grow up prematurely. At the age of four, she learned that her older sister would die in her teens. She witnessed her older sister lose the ability to walk, talk, and eat. These are typically experiences that people don’t endure until they are much older and must care for an ailing parent or grandparent. So much time was devoted to caring for her sister, Grey learned how to play by herself, and she developed an independent spirit that will push her to greatness throughout her life.
I only knew Blair for a little over two years, although it feels like a lifetime. She left an imprint on me that will never fade. In my time as Blair’s caregiver, some of the best moments were spent making silly videos with Grey, or going on golf cart adventures with music blaring. After putting Blair to bed, Grey and I would stay up (usually past her bedtime) eating Chinese food and watching TV. Since Blair has passed, these moments spent with Grey haven’t ceased. We still eat plenty of Chinese food together, and she even let me do her makeup for her freshman Homecoming dance! Grey is the embodiment of quick-wit, strength, and kindness. I consider myself lucky that she keeps me in her life and I cherish her friendship immensely.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More