Thursday, July 1: Update

Autumn had a breakdown today. The drawn curtains and somber mood took its toll on her while Claire cried in the background. She needed to escape.

OCH has a nice garden sitting area that is conducive to emotional talks. Between tears and sniffles, Autumn told me that she wanted her sister back just the way she was. She remembered how Claire would hold Autumn’s hand at night before they went to sleep. She remembered how excited Claire would be to see Autumn after school days ended. She remembered a time that Claire was angry and Autumn laughed at her. She told me how sad she was that she’d done that to Claire. She told me how much she missed Claire. She told me how often she hopes that this is all a dream.

I recall all the times I’ve told my girls that “It’s all right,” or “I’ll take care of it.” I couldn’t reassure Autumn with those platitudes this time. Autumn wants to know that her baby sister will be the same. It’s hard to tell your eight year old daughter that she has to wait and see if her little sister will be how she remembered. We’re trying to balance having honest, candid discussions with Autumn and Heidi while still protecting their claim to childhood. It’s hard.

We decided to take a walk with Claire to decompress. Heidi had made a 4th of July visor for Claire to wear. We laughed when we put it on her, but we were surprised at how well it worked for our walk.

Claire also got some new equipment upgrades. Claire is sporting some new splints for her arms, feet and elbows now. She’s graduated from her old splints because her muscle spacticity is improving. She is now in the middle school of splints: we hope she moves on to high school splints soon which are custom fitted.

Claire also got a sporty new weighted vest. The weight and pressure help Claire feel secure and safe. We hope it helps further moderate her agitation levels.

Overall, there were not any major news events today. Claire continues to do her exercises with Tiffany and me and reluctantly attends her therapy sessions. Her flexibility and range of motion continues to improve. Her agitation continues to moderate. We celebrate these little victories. Thank you for celebrating with us.