One of the hardest parts about losing a loved one is the wondering. I wonder what our relationship would be like? I wonder what their interests would be? I wonder what they would be doing with their lives? Today would be my sister’s 18th birthday, but ever since she passed away in 2017… I’ve wondered. For this blog, I asked for the help of family and friends who were close to Blair. Everyone gave their opinions on what Blair would be up to and what her goals would be as an adult. With these details, I created three versions of 18-year-old Blair, all differing in interests, colleges, and plans. They’re in a diary-type style, and you can read each one below.
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What happens when the siblings of kids with the same terminal illness meet? I can say from experience, it’s awesome. No matter your age or interests, you immediately become best friends. At this year’s MPS Conference, I had the opportunity to meet several siblings. I didn’t get to… Read More
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