“Find a place inside where there’s joy, and the joy will burn out the pain.” – Joseph Campbell
Blair had a big posse, and she was Queen B. Everyone who knew her happily bent over backwards to see her smile. If you could sing “Three Green and Speckled Frogs” in the exact way she liked it, like I could, she would let out a loud belly laugh that would have you smiling for hours. If you really wanted to see her light up, though, you could just call her sister, Grey, into the room.
After my first week of caring for Blair, her mother Susan let me know that I had received the official stamp of approval. Nine-year-old Grey had been watching me and reported back to her mother with a to-the-point, “she’s pretty good.”
I have so many wonderful memories of Grey and I. When Blair’s needs allowed for it, we would drive around on the golf cart blasting music and eating cookie dough flautas from Tijuana Flats. However, when Blair’s needs demanded my attention, she would gracefully accept the reality of our relationship. The maturity and class that Grey exuded as a fourth grader rivals that of many people I have met in my adult life.
I love this family so much that I quit my job to spend more time with them. Yes, you read that correctly. Blair was telling us what she needed, and we listened. I spent many days in the following few months at the Chapin’s trying to balance being a caregiver with being a friend to our Queen B. Laughing, crying, and trying to soak in every moment. In those difficult months Grey never missed a beat. She would come home from school and join us for a Barney episode before she had even changed out of her uniform. We talked about her day, we switched off holding hands with B, we tried to find the joy in fleeting moments.
I was so incredibly lucky to have loved Blair for six of the precious years she spent on earth, and even luckier to have been loved by her. I still think about her often. Slowly, these thoughts have begun to put a smile on my face instead of tears in my eyes. So much of my life today has grown from Blair, and the relationships I’ve built through loving her. What Grey and I experienced together, and what we mourned together, blurred the 10-year age difference between us and allowed a true friendship to form. She helped me find the joy to burn out the pain. I used to say that I saw myself in Grey and that she was my mini-me. The truth is, I hope I see Grey in myself.
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Seth, who has Sanfilippo Syndrome. Here's how the Karlsons' lives have changed because of the Coronavirus - and why you should stay home for Seth. Read More