Notes from a Rare Disease Mom

The Christmas holidays were a wonderful time for our family.Tyson had the whole week off plus a few extra days for the New Year.Time seemed to move more slowly as we played games, ate foods with ridiculous amounts of butter, and stayed in our pajamas until noon.Thea loved all of the decorations and the lights.When we drove at night, Thea would exclaim over the lit trees, the reindeer on roofs, the giant wreaths, and the candy canes.We went for strolls around the block at night enjoying the holiday displays and meeting neighbors for hot chocolate and small talk. On Christmas Day, we woke up and Thea found a baby doll crib under the Christmas tree from Santa.Her eyes grew wide and, without even touching the crib, she ran up the stairs to her room.She dashed to her baby doll and whispered in quiet awe, “Baby!Santa! There’s a bed for you!”She returned to the Christmas tree and the cradle and snuggled her baby into the sweet little bed, overjoyed with her gift.She opened each gift after t…