It happens pretty often, at least once every week. People hear that she has kidney disease and is waiting for a kidney or that she is going for weekly blood work. They put a hand on my daughter Lexi’s shoulder, look at her and say, “Oh, you poor little thing. It’s a shame you have to go through this.” Last week someone said this to her and she immediately went from smiling to frowning and looking down.
Yes, it is a shame. I’m not saying it isn’t a shame. It is absolutely infuriating that her kidneys don’t just do their job so she can go about her business. But this isn’t news to Lexi. She knows it sucks and it’s “a shame,” but she is certainly no “poor little thing.” That tiny human has more courage and bravery than any kid I know. She sits and gets her blood work and knows the regular staff so well, she is often happy to see them and excited to tell them about her recent soccer game or show them her new lunch box. She goes to her nephrology appointments excited to see her pregnant doctor so she can find out if she is having a boy or a girl. She wants to go see if her nephrologist’s beard grew any more. She doesn’t feel like a “poor little thing.” This is her normal.
At 6 years old, she looks for the positive in everything. We tell her she needs dialysis; she is happy she can still go to dance class while she is on it. We tell her she needs a kidney transplant; she focuses on the hot dog she will finally be able to eat after. Some say I do not baby her enough with all she is going through, but I’m there when she gets upset about something with her kidney disease. Her dad or I are there holding her when she is in pain at the hospital. We try to help her stay positive because that’s how we get through this. We don’t hold her and say “you poor baby.” We sit beside her and tell her she is so tough. We talk to her about other things to keep her mind off the pain. We play her favorite Bob Marley song. We make jokes and try to keep her happy because at the end of the day, she is still an ornery 6-year-old even if her typical day is not that of any other 6-year-old.
To us, she is not a “poor little thing” worthy of only our pity. She is our “tough lady” and our inspiration.