The last few days have been very draining and trying for all of us. Ryleigh just could not seem to be making progress – her heart rate is up, her appetite has not returned, she was not moving, and was miserable. It was becoming very challenging because she was in so much pain and was not willing to do anything. Yesterday was the day that I learned a huge lesson. I made the mistake of not listening very well to Ryleigh’s nurse. I got defensive and upset when the nurse tried to give me feedback about Ryleigh and what she needs from us. I learned that I need to take a step back, reflect, then respond. Instead I undermined her and was a difficult parent. After some late night reflection, talking it out with a friend, and debriefing with her night nurse I realized that I was quite embarrassed with my stinking thinking and was not willing to hear another person’s opinion and expertise.
Thankfully Ryleigh had the same nurse today. I apologized and reassured her that I would respect her views and it was not my intention to undermine her. She was so understanding, kind, and gracious. I really appreciated it.
As a result we started over and Ryleigh has had an outstanding day.

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