Notes from a Rare Disease Mom

Once a parent from our support group posted about her day.   It was full of battling with her insurance company, driving to therapies, and a daughter who wasn’t feeling well.   “Does this get any better?”   She asked in frustration.   Her question stayed with me for days afterward because I could picture exactly how her day was going.   I am very familiar with days like that.   I wanted to reassure her but when I tried to envision a time when life would be easier, my experience with life so far told a different story.   Sometimes my life gets easier and sometimes it gets harder, a lot harder.   There was a time when I thought college was hard, and now I look back at those carefree college years with envy...   I don’t think there is ever a life free of difficulty, but I also don’t think the bad days last forever.   Some days gratitude and joy come easy and some days they just don’t.   I was talking to another mom at Thea’s school.   She told me about her daughter’s battle

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 gi