Living with CVS

Living with CVS sucks.  Our sweet Emma had another episode last night. She knew she was going to get sick.  It is so sad when we are so proud that she made it to the bathroom and even held her own hair back. I never thought I would be so proud of my daughter for that. Her everyday worries are constantly on my mind. I hate that an 8 year old has to worry about when she will be sick again. No one should have to worry about that. Sometimes her syndrome changes our plan for the day. Sometimes we have to pre-plan or be extra aware of how she is feeling. It is exhausting and difficult. She shared with me tonight how she worries all the time. I just wish I could take those worries away for her.