The Home Health Care nurse came by today to draw some blood, check vital signs, and help change the protective dressing that covers the point at which the central line enters Talitha's chest. (Talitha's skin has been ultra sensitive to some of the adhesives used on the bandages and this has made her skin quite raw. Keeping the whole area around that entry point clean, dry, and protected requires vigilance and regular maintenance. And even as careful as everyone's been, some of the area doesn't look so pretty.)
Over 10% of Talitha's young life has passed since the discovery of the brain tumor. This means that she has become accustomed to multiple daily medical procedures whether at home in hospitals or in clinics. This doesn't mean she's comfortable with this new reality, nor does it mean she's not unnerved with everyone from parents to doctors coming at her all the time with poky, proddy stuff.
As we laid her on a blanket today to change her bandages we saw her use one of her little coping mechanisms: she said "hi" in her little voice to the nurse. This is her way of engaging the advancing foe to test the waters with the hope that maybe if she's cute enough they'll just smile and leave her alone. When that doesn't work she whimpers to ask for reassurance.
Once Talitha realizes that she has not warded off the intruder, she kicks into a new gear of positive reinforcement both for herself and the offending party. At the slightest pause in the procedure, she invites a conclusion by either clapping her hands or saying "yay!" or both. If not complete she implores the closest kin in the room through sad-eyes or expressions of "hold you" which being interpreted means: "please pick me up and take me as far of way from this as you possibly can."
As a parent it has been really hard to not be able to make everything "all better" all the time and watch her suffer. But, at the same time, it has been rewarding to see her attitude, perseverance, and ability to make the most of a not-so-fun situation (not to mention her trust in us). We're learning all this from a 17.5 month old baby. It is humbling and we are grateful for our little teacher.