It was a hard day. In five hours, we had visits from feeding therapy, PT, OT, Child Life (the one thing I requested), a failed IV placement and removal of the central line, a feeding tube replacement, and a painful post-op echo. Some things were necessary; others were just trying to check us off their list before the weekend. Early in the day as person after person showed up, I knew we were trying too much, and started turning people away. After the failed IVs, I asked for the echo date to be moved but was told that it could not be rescheduled. When they attempted to do the echo, the sympathetic tech and I were equally frustrated that, even with oxycodone and Tylenol and sweeties (sugar drops) and a binky AND music, Lydia was writhing and in pain and upset. The kind tech, on her own, mentioned that the echo should have been rescheduled for a better time for us as she was unable to get many images and the ones she got were poor quality. Lydia was distressed and in pain and I was mad.
Today I fought the Mom battle and it was hard. I fought to learn and understand and be heard and understood. But hard and frustrating as that was, it was nothing to Lydie’s fight. I saw the gamut in her, today: pain and fear; effort, failures, and triumph; exhaustion and peace and love. She is such a brave, special girl. She truly inspires me.
Finally we were heard. Finally changes were made. Finally I got to hold her, twice, and both times she sunk into peaceful sleep in my arms while heaven healed us both. ❤️ #misslydiefaith#heartwarrior#theluckyfew