BMT Day +144: "That's So Luki"

When I think of Maia Bee and ‪#‎LukaTheLion‬, I see him doing something silly like putting a toy on his head, and she says with a head tilt and funny, scrunchy face, “That’s so Luki!”

When I tell her that I’m going to her school for a parent-teacher conference, she immediately asks, “But, who is going to be with Luki at the hospital?”

When we leave the double header UNC basketball game, she asks me when he will be able to come home and I respond with an explanation that when the doctors say that he is better and it is safe for him to be home. Her response is “Luki needs more medicine.”

When we hear a code over the hospital intercom for the adult bone marrow unit and she waits until it is finished, only to tell me, “bone marrow, that’s what Luki has.”

When we walk the halls of the hospital and she knows locations of all the elevators, bathrooms, and literally hiding spots as if she’s a tour guide.

When she plays side by side in the playroom with kids who have had cancer nearly all their life, and shares toys without batting an eye.

When she talks to anyone wearing a scrub, doctor coat, or name badge like they are a family member, proudly showing off her report card or new dance move.

When she sees Dr. Philip, lights up, and refers to him as “her friend” as he calls her his nickname for her, “tigger” since the first time they met she was a bouncy 2 year old, jumping around in the lobby of the cancer hospital.

When she finds her spot in Luki’s room while we change his central line dressing using a sterile field.

When she greets the home health delivery person at our door and gets excited to open Luki’s medicine box.

When she compliments the hospital parking garage attendant on her flowers and forms a bond that transcends payment.

When the “choo train” driver knows her on a first name basis and always lets her sit in the front.

When she calls the hospital “mommy’s home.”

When she simply says, “I want Luki to feel better.”

She makes the most out of everything. And she’s the most selfless person I know. Always caring first about “her baby Luki” and never making any of this about her when it would be reasonable for her to do so. The world couldn’t have asked for or given a stronger, braver or more resilient big sister than Maia Bee. We couldn’t be more proud of who she is and who she is becoming. Sometimes life is more than the pincher grasp, or counting past 30, or identifying all the letters. Sometimes life is about handling what life gives us with grace and courtesy.

There was something about this photo that made me think about Maia’s phrase, “That’s so Luki.” Even though he’s still not making expressions, it’s like he’s thinking about it and trying to a little bit. He did it again when I brushed his teeth and when reading some books. He had another relaxing night day with some progress — cruising along furniture, crawling, sitting, and some climbing attempts to get closer to me. There were two long naps, but that often happens when he getting closer to needing a blood transfusion which may happen overnight. His heart rate and other vitals continue to look good and he’s on the books for another spinal tap tomorrow. No water after 6 am so curious what creative things he will do to attempt to get “more please.” That’s so Luki!